Glossary

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  • a

  • Absolute neutrophil count (ANC)
    The number of white blood cells in the blood that are neutrophils. A low ANC indicates neutropenia and a possible increased risk of infection.
  • Accelerated Approval
    Designation assigned to a drug by the Food and Drug Administration (FDA) intended to make promising products for life-threatening diseases available on the market on the basis of preliminary evidence prior to formal demonstration of patient benefit. In this case, clinical studies  and subsequent FDA evaluation are based on a surrogate marker that is considered likely to predict patient benefit. The marketing approval that is granted may be considered provisional, and a company may be required to complete additional clinical studies that formally demonstrate patient benefit.
  • Active immunotherapy
    Type of immunotherapy that stimulates the body to mount an immune response; an example is a vaccine.
  • Adhesion molecules
    Complementary molecules present on cell surfaces that allow cells to interact with each other, acting in the same way as a lock and key.
  • Adjuvant
    (1) When referring to vaccines, an adjuvant is a substance administered as part of, or along with, a vaccine that increases its effectiveness by strengthening the immune response against the vaccine. (2) Adjuvant therapy also refers to a treatment that is given in addition to a standard treatment regimen to increase its effectiveness.
  • Adriamycin (doxorubicin)
    A type of chemotherapy which is given intravenously (into a vein). It is part of an older type of myeloma treatment called VAD. VAD consists of the combination of Vincristine (another chemotherapy drug), Adriamycin, and dexamethasone which is a steroid.
  • Adverse event (AE)
    Any unfavorable and unintended sign (including an abnormal laboratory finding), symptom, or disease temporally associated with the use of a medical treatment or procedure that may or may not be considered related to the medical treatment or procedure. An adverse event is a term that is a unique representation of a specific event used for medical documentation and scientific analyses. See Grade 1-4 adverse events.
  • Albumin
    Major protein found in the blood. A patient’s albumin level can provide some indication of overall health and nutritional status and may also be useful in staging myeloma according to a recently proposed staging system.
  • Alkeran®
    See Melphalan.
  • Allogeneic stem cell transplant
    A procedure in which bone marrow or peripheral blood stem cells from a donor (usually related) are collected, stored and infused into a patient (recipient) following high-dose chemotherapy and/or radiation therapy.
  • Allogeneic transplant
    Transplant from a human donor who is not an identical genetic match.
  • Allograft
    Allogeneic stem cell transplant.
  • Aloxi® (palonosetron)
    A type of medicine used to prevent or treat nausea and vomiting as a result of cancer treatment. It is given intravenously (into a vein).
  • Alpha interferon
    Cytokine produced by T cells that exhibits a variety of immunomodulating effects, including suppression of cell growth and enhancement of tumor cell killing.
  • Amyloid protein
    Fiber-like substance, often composed of light chains and other proteins, that can accumulate in and damage various tissues and organs.
  • Amyloidosis
    Condition related to multiple myeloma whereby a patient’s light chains can clump together to form insoluble protein fibers known as amyloid fibrils. Amyloid fibrils can accumulate in various tissues and organs, disrupting their normal functions. Rarely, patients with myeloma may also develop amyloidosis.
  • Anemia
    Decrease in the number of red blood cells in the blood.
  • Angiogenesis
    Growth of new blood vessels.
  • Anthracycline
    Class of anticancer drugs that includes doxorubicin (Adriamycin®) and related compounds such as daunorubicin and daunomycin.
  • Antibody
    Protein produced by a plasma cell that is generated in reaction to a foreign protein (antigen), thus producing an immunity against that protein; also known as an immunoglobulin.
  • Antigen
    Substance that stimulates the production of an antibody to which it subsequently binds.
  • Anzemet® (dolasetron)
    A type of medicine used to prevent or treat nausea and vomiting as a result of cancer treatment. It is given intravenously (into a vein).
  • Apheresis
    Procedure in which blood is taken from a donor, a blood component (such as white blood cells, red blood cells or plasma) is separated out, and the remaining blood components are reinfused back into the donor.
  • Apoptosis
    Programmed (natural) cell death.
  • Asthenia
    Marked loss of body strength.
  • Autograft
    Autologous stem cell transplant.
  • Autoimmune diseases
    Illnesses that occur when the body tissues are attacked by its own immune system.
  • Autologous
    From the patient. In myeloma, this term usually refers to a commonly used type of stem cell transplantation where the patient serves as their own donor.
  • Autologous peripheral blood stem cell transplants
    A type of stem cell transplantation where the patient’s own stem cells are used. In this type of transplant, stem cells are collected from the circulating blood (peripheral blood). Autologous peripheral blood stem cell transplants are the most common type of stem cell transplants performed today.
  • Autologous stem cell transplant
    Procedure in which a patient’s own stem cells from the bone marrow or peripheral blood are collected, stored and reinfused following high-dose chemotherapy and/or radiation therapy.
  • Autologous transplant
    Transplant whereby the patient’s own cells or tissues are collected and reinfused or transplanted.

  • b

  • B cell
    White blood cell that gives rise to a plasma cell after being exposed to a foreign substance; also called a B lymphocyte.
  • B lymphocyte
    See B cell.
  • Basic fibroblast growth factor (bFGF)
    Growth factor that promotes angiogenesis (the growth of new blood vessels); also known as FGF-2.
  • Bcl-2
    Protein made by cancer cells that is thought to block chemotherapy-induced cell death.
  • Bence-Jones protein
    See Light chain.
  • Beta 2-microglobulin (ß2-microglobulin or ß2-M)
    Protein normally found on the surface of various cells in the body. Increased serum levels can occur in patients with myeloma or kidney disease. Lower levels are associated with a more favorable prognosis in myeloma.
  • Biaxin (clarithromycin)
    Type of antibiotic.
  • Bisphosphonate
    Type of drug used to treat osteoporosis and bone disease in cancer patients. Bisphosphonates work by inhibiting the activity of bone-destroying cells called osteoclasts.
  • Bladé Criteria
    Set of stringent, standardized criteria developed by members of the European Group for Blood and Marrow Transplant (EBMT), International Bone Marrow Transplant Registry (IBMTR), and Autologous Blood and Marrow Transplant Registry (ABMTR) that are increasingly being used to measure response to therapy in myeloma clinical trials (Bladé et al. Br J Haematol. 1998;102(5):1115-1123.) The criteria include two assessments of M protein levels, percent plasma cells in the bone marrow and skeletal disease performed at least 6 weeks apart.
  • Blood urea nitrogen (BUN)
    Byproduct of protein metabolism that is normally filtered out of the blood and found in the urine. Elevated levels in the blood can indicate decreased kidney function.
  • Bone marrow
    Soft, spongy tissue found in the center of many bones where blood cells are produced.
  • Bone marrow aspiration
    Removal of fluid and cells of the bone marrow via use of a needle.
  • Bone marrow biopsy
    Removal of bone marrow tissue via the use of a needle.
  • Bone marrow transplant
    Procedure in which stem cell-containing bone marrow is collected, stored and infused following high-dose chemotherapy and/or radiation therapy. These are rarely done in multiple myeloma.
  • Bone remodeling
    Process of normal bone maintenance whereby old, worn-out bone is broken down and removed by osteoclast cells and new bone is formed by osteoblast cells.
  • Bone resorption
    The normal process of breaking down of bone by osteoclasts during bone remodeling. Bone resorption can be increased in myeloma.
  • Bone (skeletal) survey
    Series of X-rays of the skull, spine, arms, ribs and legs.

  • c

  • C-reactive protein (CRP)
    Protein produced by the liver when there is an inflammatory process occurring in the body. Serum levels of CRP are increased in various inflammatory diseases, degenerative diseases and cancers, including myeloma. Lower levels are associated with a more favorable prognosis in myeloma.
  • Calcium
    Mineral important in bone formation. Elevated serum levels occur when there is bone destruction.
  • Catheter
    A thin flexible tube that is inserted into the body. For example, it may be inserted into a vein in order to give drugs, blood or nutrients. Catheters are also used to take blood or empty the bladder.
  • CD34+
    Cell surface marker. CD stands for cluster of differentiation and the 34+ indicates a specific antigen for which this cell is positive. Stem cells are CD34+.
  • Chemistry profile
    Blood test that determines levels of several chemical compounds in the blood at one time. Of particular importance in myeloma are levels of blood urea nitrogen (BUN), calcium, creatinine and lactate dehydrogenase (LDH).
  • Chemobrain
    Constellation of symptoms, such as loss of memory, difficulty with language and lack of concentration, that have been reported by cancer patients who receive chemotherapy; also known as cognitive dysfunction.
  • Chemotherapy
    The use of drugs to treat cancer.
  • Chromosome
    A structure in cells composed of condensed DNA (which contains the genes).
  • Chromosome analysis (cytogenetic testing)
    Laboratory test that measures the number and normalcy of chromosomes; also known as cytogenetic testing.
  • Chromosome Deletion
    In some individuals with multiple myeloma, a piece of one or more of certain chromosomes may be missing (or deleted). A deletion in certain chromosomes may indicate a more aggressive form of myeloma.
  • Colony-stimulating factor (CSF)
    Protein that stimulates the development and growth of blood cells; sometimes called growth factor. Granulocyte colony-stimulating factor is a CSF that is used to mobilize stem cells from the bone marrow into the bloodstream prior to apheresis.
  • Complete blood count (CBC)
    Blood test that measures the number of red blood cells, white blood cells, and platelets in the blood and the relative proportions of the white blood cells present.
  • Complete remission
    See complete response
  • Complete response (CR)
    A treatment outcome where there are ≤5% plasma cells in the bone marrow and no evidence of myeloma proteins in the serum or urine as measured by standard laboratory techniques.
  • Computed tomography (CT)
    Imaging technique that uses a computer to generate 3-dimensional X-ray pictures; also known as computerized axial tomography (CT).
  • Computerized axial tomography (CAT)
    See Computed tomography (CT).
  • Conditioning regimen
    Combination of chemotherapy and/or radiation treatments administered over a period of several days prior to stem cell transplantation in order to kill cancer cells.
  • Consolidation Therapy
    Anti-myeloma treatment given after the initial therapy in order to further reduce the number of cancer cells.
  • Conventional chemotherapy
    Administration of chemotherapy at a dose that does not completely destroy the bone marrow; also known as standard-dose chemotherapy.
  • Cord blood transplant
    Type of transplant where the stem cells are obtained from the umbilical cord and placenta (afterbirth) following the delivery of a baby. These cells are frozen for future use.
  • Corticosteroid
    Potent class of drugs that has anti-inflammatory, immunosuppressive and antitumor effects. Dexamethasone and prednisone are examples of corticosteroids.
  • Coumadin® (also known as warfarin)
    A pill that is a type of blood thinner. It is used to prevent blood clots.
  • CR
    See complete response
  • Creatinine
    Product of energy metabolism of muscle that is normally filtered out of the blood and found in the urine. Elevated levels in the blood can indicate decreased kidney function.
  • Cryoglobulinemia
    Condition that occurs when a myeloma protein is of a specific type that comes out of solution as particles when exposed to cold temperatures. These particles may block small blood vessels and cause symptoms such as pain and numbness in the fingers and toes in cold weather.
  • Cryopreservation
    A method of freezing cells that permits storage over an extended period.
  • Cure
    Treatment outcome where there is complete and lasting recovery from disease. This has not yet been achieved in myeloma.
  • Cutaneous T-cell lymphoma (CTCL)
    A type of non-Hodgkin’s lymphoma which is a cancer of the immune system.
  • Cyclooxygenase-2 (COX-2)
    A protein that acts as an enzyme to enhance the production of prostaglandins responsible for promoting inflammation.
  • Cyclophosphamide
    Type of chemotherapy. Brand names include Cytoxan® and Neosar®.
  • Cyclosporine
    Immunosuppressive drug used following allogeneic transplants that helps prevent graft-versus-host disease (donor cells attacking the recipient’s cells).
  • Cytogenetic testing
    See Chromosome analysis.
  • Cytokine
    Soluble factor produced by cells that influences other cells.
  • Cytoxan®
    See Cyclophosphamide.

  • d

  • Decadron® (dexamethasone)
    Type of corticosteroid used in the treatment of myeloma. Decadron is part of many combination chemotherapy regimens.
  • Deep vein thrombosis (DVT)
    Serious condition where a blood clot forms in one of the deep veins in the body, usually in the legs or lower abdomen. DVT is treated with a blood thinner (also called an anticoagulant).
  • Dendritic cell
    Immune cell that plays an important role in initiating and regulating immune responses.
  • Dexamethasone
    A steroid used in the treatment of multiple myeloma, often in combination with another anti-myeloma drug. Decadron® is one brand of dexamethasone.
  • Disease-free survival
    The length of time during and after treatment in which a patient is living with a disease that does not get worse; also referred to as progression-free survival (PFS).
  • Disease status
    Whether a patient has already received therapy for their myeloma disease and if so, what was the outcome.
  • DMSO
    Dimethyl sulfoxide, a colorless chemical used for cryopreservation of stem cells. When introduced into the body, may cause unpleasant or even serious toxic effects.
  • DNA (deoxyribonucleic acid)
    Genetic material of the cell located in the chromosomes.
  • Donor Lymphocyte Infusion (DLI)
    Experimental therapy used following high-dose chemotherapy and allogeneic stem cell transplant; involves the administration of additional immune cells from the same allogeneic donor to help attack myeloma cells and control the disease.
  • Doxil® (doxorubicin HCl liposome injection)
    A chemotherapy drug used in cancer treatment. It is a reformulated version of doxorubicin (Adriamycin®), a cancer drug that was used for many years in traditional chemotherapy regimens, including VAD (vincristine, Adriamycin, and dexamethasone) in myeloma.

  • e

  • Electrolytes
    Electrolytes are minerals that are present in the body such as sodium, potassium, chloride and bicarbonate. The balance of electrolytes is essential for the normal function of organs. Diarrhea may cause electrolyte depletion.
  • Electrophoresis (EP)
    Laboratory test used to measure the levels of various proteins in the blood or urine. Uses an electrical current to sort proteins by their molecular size and charge.
  • Emend® (aprepitant)
    A type of medicine used to prevent or treat nausea and vomiting as a result of cancer treatment. It may be given either orally or intravenously (into a vein).
  • Emerging therapy
    New treatment that is being investigated in clinical trials.
  • Endothelial cell
    Type of cell that lines blood vessels.
  • Engraftment
    Process in which stem cells in transplanted bone marrow or blood migrate to the bone marrow and begin to grow and produce new white blood cells, red blood cells and platelets.
  • Enteritis
    Stomach pain or cramps caused by an inflammation of the small intestine.
  • Erythropoiesis
    The production of red blood cells by the bone marrow.
  • Erythropoietin
    Growth factor that stimulates the bone marrow to produce red blood cells.
  • Esophagitis
    Heartburn caused by an irritated esophagus (tube leading from the mouth to the stomach).
  • Event-free survival (EFS)
    Term used in oncology clinical trials to denote the length of time that a patient remains free of certain negative events, such as cancer recurrence or progression, complications from the disease or death from any cause. The specific events, as well as when timing begins, may vary from trial to trial.
  • Expanded access
    Refers to any of the procedures initiated by the Food and Drug Administration (i.e., compassionate use, parallel track and treatment IND) that distributes experimental drugs to patients who are failing on currently available treatments for their condition and are unable to participate in ongoing clinical trials.

  • f

  • Farydak® (Panobinostat)
    Farydak® is a histone deacetylase inhibitor that is administered in combination with Velcade® (bortezomib) and dexamethasone. It is indicated for the treatment of patients with multiple myeloma who have received at least 2 prior regimens, including Velcade and an immunomodulatory agent. This indication was approved by the FDA on February 23, 2015, under accelerated approval based on progression-free survival.
  • Fast Track designation
    Status assigned by the Food and Drug Administration (FDA) to a drug or product in clinical trials signifying that the FDA will facilitate and expedite the development and review of the application for the approval of the new drug. Fast track status is usually reserved for drugs that are intended for the treatment of serious or life-threatening conditions and which demonstrate the potential to address an unmet medical need.
  • Febrile neutropenia
    Presence of a low neutrophil count in the blood that is associated with fever; may indicate the presence of infection (that may be serious or life-threatening).
  • Fibroblast growth factor 2 (FGF-2)
    Growth factor that promotes angiogenesis (the growth of new blood vessels); also known as basic fibroblast growth factor (bFGF).
  • Filgrastim
    A type of growth factor that stimulates the growth of white cells in the bone marrow; also known as G-CSF (granulocyte colony stimulating factor) or Neupogen™.
  • Fluorescence in situ hybridization (FISH)
    Type of chromosome analysis that detects abnormalities of specific chromosomes.
  • Fluoroscope
    Type of X-ray that allows viewing of bone.

  • g

  • Grade 1 Adverse Event (AE)
    A mild side effect resulting from a medical therapy. Minimal or no symptoms may be present and typically medical intervention is not required.
  • Grade 2 AE
    A moderate side effect resulting from a medical therapy. Depending on the nature of the side effect, medical intervention may or may not be needed.
  • Grade 3 AE
    A severe side effect resulting from a medical therapy. This side effect typically interferes with patient functioning and requires medical intervention.
  • Grade 4 AE
    A life-threatening or disabling side effect resulting from a medical therapy. Immediate medical intervention is required.
  • Graft-versus-host disease (GVHD)
    Complication of allogeneic transplants resulting from donor immune cells recognizing the recipient’s cells as foreign and mounting an attack against them.
  • Graft-versus-myeloma effect
    Beneficial effect of allogeneic transplants resulting from the donor cells mounting an attack on the recipient’s myeloma cells.
  • Granulocyte
    Type of white blood cell important in fighting infection. Neutrophils are the most abundant type of granulocyte.
  • Granulocyte colony-stimulating factor (G-CSF)
    A drug that stimulates the production of infection-fighting white blood cells known as granulocytes. G-CSF is used to help prevent low white blood cell counts and infection in patients receiving chemotherapy and/or stem cell transplants and is also used to help mobilize stem cells prior to stem cell transplant. In addition, it may be used to stimulate white blood cell production in patients whose white blood cell levels drop as a side effect of an anti-myeloma treatment.
  • Granulocyte-macrophage colony-stimulating factor (GM-CSF)
    A drug that may be used as an alternate to G-CSF (see above). It stimulates the production of infection-fighting white blood cells known as granulocytes and macrophages. Similar to G-CSF, GM-CSF is used to help prevent low white blood cell counts and infection in patients receiving chemotherapy and/or stem cell transplants and is also used to help mobilize stem cells prior to stem cell transplant.
  • Growth factors
    Drugs that are used to stimulate the production of certain types of cells. The most commonly used growth factors are red blood cell growth factors (also known as erythropoietin) and white blood cell growth factors (also known as colony stimulating factors or CSFs).

  • h

  • Hand-foot syndrome (HFS)
    Skin condition noted by tingling or burning, redness, flaking, bothersome swelling, small blisters or small sores on the palms of the hands or soles of the feet. HFS is a common side effect of certain types of chemotherapy, such as doxorubicin and liposomal doxorubicin (Doxil), and is also known as palmar-plantar erythrodysesthesia (PPE).
  • Heavily pre-treated
    Refers to patients who have recently had several prior therapies for their disease.
  • Heavy chain
    The longer of the two protein chains that make up an immunoglobulin molecule.
  • Hematocrit
    A laboratory test used to determine if anemia is present; refers to the percentage of the volume of a blood sample that consists of red blood cells.
  • Hematologic
    Pertaining to the blood.
  • Hematopoiesis
    Formation and development of blood cells in the bone marrow.
  • Hematopoietic stem cells
    Cells found in the bone marrow or the circulating blood that are responsible for the production of other blood cells.
  • Hemoglobin
    A substance found within red blood cells that carries oxygen from the lungs to the tissues in the body. Low hemoglobin levels are an indicator of anemia.
  • Heparanase
    Enzyme produced by tumor cells that promotes angiogenesis by loosening the “glue” that holds cells of blood vessel walls together. This, in combination with angiogenic growth factors, allows the sprouting of new blood vessels.
  • Heparin
    A type of blood thinner used to prevent blood clots. It is given as an injection. Some types may be self-administered by patients at home.
  • Hepatic impairment
    Reduced liver function that is noted by increased levels of various substances in the blood, such as bilirubin.
  • High-dose chemotherapy
    Administration of very high doses of chemotherapy that may be more effective in eliminating myeloma cells than standard treatments. High-dose chemotherapy destroys the bone marrow, which is responsible for the production of blood cells. After high-dose chemotherapy, a procedure called stem cell transplant is required to replenish blood-forming bone marrow cells.
  • High risk myeloma
    A type of myeloma where there is some feature that indicates a worse prognosis. For example, certain types of abnormalities in the DNA are associated with more aggressive disease. In addition, elevated blood levels of a protein called beta 2-microglobulin are also associated with worse prognosis.
  • Hypercalcemia
    Condition noted by elevated levels of calcium in the blood due to increased bone destruction.
  • Hypercalcemia of malignancy (HCM)
    Condition occurring in various forms of cancer noted by elevated levels of calcium in the blood due to increased bone destruction; also known as tumor-induced hypercalcemia (TIH).
  • Hyperviscosity syndrome
    Condition that can occur in myeloma whereby the protein concentration in the blood becomes very high and the blood becomes very thick and sticky. Symptoms can include shortness of breath, confusion, and chest pain.
  • Hypothyroidism
    Condition where the thyroid gland is less active than normal, resulting in symptoms such as a low metabolic rate and lack of energy.

  • i

  • Immune response
    Reaction occurring within the body to defend against foreign invaders. 
  • Immune system
    Network of related cells, tissues and organs that protect the body from disease organisms, other foreign bodies and cancers.
  • Immunoelectrophoresis
    See Immunofixation electrophoresis.
  • Immunofixation electrophoresis (IFE)
    Type of electrophoresis that uses a special antibody staining technique to identify specific types of immunoglobulin and light chains; also called immunoelectrophoresis.
  • Immunoglobulin
    Protein produced by a plasma cell that is generated in reaction to a foreign protein (antigen), thus producing an immunity against that protein; also known as an antibody. Immunoglobulins are made up of 2 heavy chains and 2 light chains that form a “Y”-like structure and can be of the IgA, IgD, IgE, IgG or IgM class.
  • Immunomodulatory agent
    Drug that affects, enhances or suppresses the immune system.
  • Immunomodulatory drugs or IMiDs®
    Drugs that work to fight cancer cell growth by impacting the functioning of the immune system.
  • Immunosuppressive drug
    Drug given to suppress a patient’s immune system, such as one given to prevent rejection of transplanted tissue.
  • Immunotherapy
    The treatment of, or prevention against, a disease achieved through manipulation of the patient’s immune system.
  • Induction therapy
    Initial therapy for myeloma. This term also refers to the use of anti-myeloma drugs prior to high-dose chemotherapy and stem cell transplant in order to reduce the tumor burden.
  • Infusion Reaction
    Possible side effect seen with some drugs that are given intravenously. Symptoms are usually mild to moderate and most commonly include chills, fever, nausea, weakness, headache, skin rash and/or itching. In most cases, these reactions can be managed by either slowing or stopping the infusion. Although rare, severe reactions such as difficulty breathing or low blood pressure may occur which require treatment.
  • Institutional Review Board (IRB)
    Board designed to oversee the research process in order to protect participant safety. Made up of researchers, ethicists and lay people from the community, the board must review clinical trial protocols and the informed consent forms participants sign.
  • Interferon (IFN)
    Substance naturally produced in the body by virus-infected cells that protects noninfected cells from viral infection. Interferon also has various effects on the immune system and is used in the treatment of several cancers and infectious diseases.
  • Interleukin 1 beta (IL-1b)
    Cytokine that enhances the growth and survival of B cells and myeloma cells and promotes inflammation.
  • Interleukin 2 (IL-2)
    Cytokine (growth factor) produced by T-cells that stimulates the growth of T cells and B cells.
  • Interleukin 4 (IL-4)
    Cytokine that enhances the immune system’s ability to fight tumor cells.
  • Interleukin 5 (IL-5)
    A potent T-cell derived factor that stimulates the growth of B-cells.
  • Interleukin 6 (IL-6)
    Cytokine that promotes the growth and survival of myeloma cells and normal B cells.
  • Interleukin 8 (IL-8)
    Cytokine secreted by bone marrow stromal cells in myeloma patients that promotes formation of osteoclasts (bone degrading cells).
  • Interleukin 10 (IL-10)
    Cytokine involved in the growth and survival of myeloma cells.
  • Interleukin 12 (IL-12)
    Cytokine that promotes T cell function and tumor cell killing.

  • k

  • Kepivance® (palifermin)
    Medication that is used to protect against the development of mouth sores that are a side effect of high-dose chemotherapy. It may also reduce the duration and severity of mouth sores if they do occur.
  • Kyphoplasty
    Procedure used to treat spinal compression fractures whereby a balloon is inserted into the compressed vertebra and inflated to elevate the collapsed section. The cavity is filled with bone cement, stabilizing and preserving the re-established height.
  • Kyprolis™
    A new type of proteasome inhibitor. It is in the same class of drugs as Velcade.
  • Kytril® (granisetron)
    A type of medicine used to prevent or treat nausea and vomiting as a result of cancer treatment. It is taken orally.

  • l

  • Lactate dehydrogenase (LDH)
    Enzyme found in body tissues. Elevated blood levels occur when there is tissue damage and may occur in myeloma, where they reflect tumor-cell burden.
  • Leukine® (sargramostim)
    A brand of Granulocyte colony-stimulating factor (G-CSF) that stimulates the growth of white blood cells in the bone marrow.
  • Light chain
    The shorter of the two protein chains that make up an immunoglobulin molecule. May be of the kappa or lambda type. Light chains produced by myeloma cells are also referred to as Bence-Jones proteins.
  • Liposome
    Bubble- or onion-like particle made out of lipids (fats) that is used to encapsulate drugs. Encapsulation helps the drug remain in the body for a longer period of time and may reduce toxicity.
  • Lymphocyte
    Small white blood cell essential for normal function of the immune system; may be 1 of 2 types: a T lymphocyte or B lymphocyte.

  • m

  • Magnetic resonance imaging (MRI)
    Imaging technique that uses magnetic energy to provide detailed images of bone and soft tissue.
  • Maintenance therapy
    Treatment that is given to patients in remission over a long period of time, in order to reduce the risk of relapse.
  • Malignant
    Cancerous, continuing to divide.
  • Marketing Authorization Application (MAA)
    Compilation of information on the safety and efficacy of a new drug that is submitted to the European regulatory agency in order to request approval to market the drug as therapy for a particular disease indication; similar to a New Drug Application (NDA), which is submitted in the United States.
  • Matrix metalloproteinases (MMPs)
    Enzymes that break down the structure of connective tissue.
  • Melphalan
    Type of chemotherapy often used in the treatment of myeloma (also known as Alkeran®).
  • Metastasis
    The spread of tumor cells from the initial site to other areas of the body.
  • Microvascular density (MVD)
    Measure of the number of blood vessels in the bone marrow as an indication of the degree of angiogenesis (growth of new blood vessels). A value of less than 6 blood vessels per field when viewing bone marrow cells at 400x magnification is associated with a more favorable prognosis.
  • Mini-allogeneic transplant
    Type of allogeneic stem cell transplant that uses lower doses of chemotherapy and thus does not completely destroy the bone marrow; also known as mini-transplant or non-myeloablative transplant.
  • Mini-transplant
    See mini-allogeneic transplant.
  • Minimal residual disease (MRD)
    The amount of myeloma cells remaining after a course of treatment, as measured by very sensitive testing; can be as low as one myeloma cell in 1 million normal cells. 
  • Minimal response
    Treatment outcome where there is less than 50% decrease in M protein; also known as minor response. Some myeloma groups consider minimal response to be part of the definition of stable disease.
  • Mobilization
    Administration of colony-stimulating factors or chemotherapy to help move stem cells from the bone marrow into the blood stream to increase the number of peripheral blood stem cells collected for a stem cell transplant.
  • Monoclonal antibody
    Type of man-made antibody that is used in the diagnosis and treatment of various diseases. All monoclonal antibodies of a specific type are identical to each other.
  • Monoclonal gammopathy of undetermined significance (MGUS)
    Precancerous and asymptomatic condition noted by the presence of M protein in the serum or urine. MGUS may progress to myeloma.
  • Monoclonal (M) protein
    A type of protein made by myeloma cells, used to estimate the extent of myeloma disease. It is an abnormal type of antibody (or immunoglobulin) and is found in the blood or urine. M protein levels are used to determine the effectiveness of myeloma treatments.
  • Monocyte/Macrophage
    Type of white blood cell important in the immune response.
  • Morphology
    Overall appearance.
  • MP
    A therapy consisting of the combination of melphalan, a chemotherapy drug, and prednisone, a steroid. MP has been used in myeloma treatment for many years. Today, it is usually given in combination with one of the newer agents, such as Revlimid, Velcade or Thalomid.
  • Mucositis
    Inflammation of mucous membranes lining the digestive tract; a common and painful side effect of intensive chemotherapy or radiotherapy that can result in sores and infection.
  • Mycophenolate mofetil (CellCept®)
    Immunosuppressive drug used following allogeneic transplants that helps prevent graft-versus-host disease (donor cells attacking the recipient’s cells).
  • Myeloablation
    The killing of bone marrow by radiation or chemotherapy. This term usually refers to the complete or near-complete destruction of the bone marrow.
  • Myelodysplastic syndrome (MDS)
    A group of diseases that affect the blood. It is not related to multiple myeloma.

  • n

  • Natural killer (NK) cell
    Type of white blood cell important in killing tumor cells.
  • Near complete response (near CR)
    Response to therapy where M protein is no longer detectable in the blood and/or urine using conventional tests, but is detectable with the more sensitive immunofixation test, and there are less than 5% plasma cells in the bone marrow.
  • Nephrotoxicity
    Toxicity to the kidneys.
  • Neuropathic Pain
    Chronic pain caused by damage to, or dysfunction of, nerves.
  • Neuropathy
    Disorder of the nerves that can result in abnormal or decreased sensation or burning/tingling. When the hands and feet are affected, it is referred to as peripheral neuropathy.
  • Neutropenia
    Below-normal number of neutrophils.
  • Neutrophil
    Type of white blood cell that plays an important role in the immune system (e.g., can destroy bacteria).
  • New Drug Application (NDA)
    Compilation of information on the safety and efficacy of a new drug that is submitted to the U.S. Food and Drug Administration (FDA) in order to request approval to market the drug as therapy for a disease indication.
  • Newly diagnosed disease
    Multiple myeloma that has not yet been treated.
  • Non-myeloablative allogenic transplant
    See mini-allogeneic transplant
  • Nonsecretory myeloma
    Rare form of myeloma affecting about 1% of myeloma patients where the malignant plasma cells do not secrete M protein or light chains.
  • Nonsteroidal anti-inflammatory drugs (NSAIDs)
    Common types of painkillers. There are both over-the-counter NSAIDs as well as prescription NSAIDs. Examples of over-the-counter NSAIDs include aspirin, Motrin® (ibuprofen) and Aleve® (naproxen)
  • Novel erythrocyte stimulating protein (NESP)
    Protein that stimulates the bone marrow to produce red blood cells.
  • Nuclear factor ?B (NF-?B)
    Key survival protein found within the cell that acts as a messenger. When a cell receives an external signal, such as a growth factor, NF-kB transfers the message to the nucleus of the cell, causing some type of response, such as cell growth.

  • o

  • Office for Human Research Protections (OHRP)
    Government office that safeguards participants in federally funded research and provides unity and leadership for many federal departments and agencies that carry out research involving human participants.
  • Orphan Drug
    Term referring to a product that treats a rare disease affecting fewer than 200,000 Americans. The Food and Drug Administration (FDA) provides this designation and incentives for companies making orphan drugs to stimulate the research, development and approval of products that treat rare diseases.
  • Osteoblast
    Bone-forming cell.
  • Osteoclast
    Bone-destroying cell that works in conjunction with bone-forming cells to repair bone.
  • Osteoclast-activating factor (OAF)
    Substance released by tumor cells that promotes the activity of bone-destroying osteoclasts. Examples of OAFs include parathyroid hormone-related peptide (PTHrP), growth factors and cytokines.
  • Osteolytic lesion
    Soft spot in the bone where bone tissue has been destroyed. The lesion appears as a hole on a standard bone X-ray.
  • Osteonecrosis
    Death or destruction of bone tissue due to trauma, loss of blood supply or disease.
  • Osteopenia
    A condition where bones are thinner than normal, but the bone loss is not severe enough to be classified as osteoporosis.
  • Osteoporosis
    Generalized bone loss typically associated with old age.
  • Overall response rate (ORR)
    Typically the percentage of patients who respond to a specific therapy in a clinical trial with a partial response or better.
  • Overall survival (OS)
    Term used in oncology clinical trials to denote the length of time a patient survives.

  • p

  • Paget’s Disease
    A bone disease that is not related to cancer. It is a chronic condition that results in enlarged and deformed bones.
  • Palifermin
    Medication that stimulates the growth of cells found in the oral cavity and skin and reduces the duration and severity of oral mucositis (inflammation of the lining of the digestive tract) after intensive chemotherapy and radiotherapy for hematologic cancers. The brand name for palifermin is Kepivance™.
  • Palliative
    Meant to reduce symptoms and relieve pain rather than to alter the course of disease.
  • Palmar-plantar erythrodysesthesia (PPE)
    See hand-foot syndrome (HFS)
  • Pamidronate (Aredia®)
    A type of bisphosphonate. Bisphosphonates are drugs that are used to treat osteoporosis as well as to prevent and treat bone problems in myeloma patients.
  • Paraprotein
    See Monoclonal protein.
  • Parathyroid hormone-related peptide (PTHrP)
    Hormone produced by certain tumors that promotes the activity of bone-destroying osteoclasts and causes increased calcium in the blood (hypercalcemia).
  • Partial response (PR)
    Treatment outcome where there is a greater than 50% decrease in M protein; also referred to as partial remission.
  • Pegylated
    When a polyethylene glycol molecule is added on to a drug molecule. Pegylation helps a drug remain in the body for a longer period of time.
  • Performance status
    A measure of a patient’s ability to perform everyday functions and self-care.
  • Peripheral blood
    The blood that circulates throughout the body.
  • Peripheral blood stem cell (PBSC)
    Stem cells collected from the blood. The term “peripheral” means that the cells come from outside the bone marrow.
  • Peripheral blood stem cell (PBSC) transplant
    Procedure in which blood containing mobilized stem cells is collected by apheresis, stored and infused following high-dose chemotherapy and/or radiation therapy.
  • Peripheral neuropathy
    Disorder of the nerves that can result in abnormal or decreased sensation or burning/tingling in the hands and feet.
  • Phase I/II Study
    A clinical study that combines a Phase I and a Phase II trial of the same treatment. First, the Phase I part of the trial determines a safe dose, then more patients are treated at this dosage in the Phase II part of the study to further evaluate safety and efficacy.
  • Phase I Study
    An early, small clinical study which is used to determine a drug’s safety and dosage levels in humans.
  • Phase II Study
    Phase of clinical testing where a new treatment is evaluated for activity. In cancer trials, the new treatment will be tested against a certain type of cancer.
  • Phase III study
    A large clinical study (or trial) conducted in order to determine the effectiveness and safety of new treatments. Usually, the new treatment is compared to an established treatment (not placebo).
  • Phase IV study
    Clinical study conducted after a drug is approved by the Food and Drug Administration (FDA); may be conducted at the request of the FDA or by the sponsoring company for various reasons. Phase IV studies may involve a larger patient population than that studied during earlier clinical trials; they help monitor the safety of the drug and provide ongoing technical support.
  • Placebo
    Drug or treatment that is designed to look like the medicine being tested but doesn’t have the active ingredient. Placebos are very rarely used in cancer treatment trials.
  • Plasma cell
    A type of white blood cell that normally makes up about 5% of all cells found in bone marrow. As part of the immune system, they combat infection by producing disease-fighting proteins called immunoglobulins, or antibodies. When foreign substances — or antigens — enter the body, plasma cells develop from a type of white blood cell called B cells. In response to invasion by antigens, groups of plasma cells produce antibodies to fight off disease and infection. Each plasma cell develops in response to a particular antigen and produces antibodies specific to it, resulting in millions of different antibodies being available to fight invaders in each patient.
  • Plasmablast
    Immature plasma cell.
  • Plasmablastic morphology
    When the shape and appearance of myeloma cells are more similar to that of early immature plasma cells (plasmablasts). Absence of plasmablastic morphology typically indicates a more favorable prognosis.
  • Plasmacytoma
    Single tumor composed of malignant plasma cells that occurs in bone or soft tissue. Patients with a plasmacytoma may develop myeloma.
  • Plasmapheresis
    Procedure in which blood is taken from a donor, the plasma is separated out and the remaining blood cells are reinfused back into the donor; fluids are sometimes administered to replace the removed plasma. In myeloma patients, this technique may be used to remove excess monoclonal protein in the blood.
  • Plateau phase
    When the outcome of therapy, be it a response or stable disease, has leveled off and disease parameters remain at a stable level.
  • Platelets
    Small cell fragments in the blood that help blood clotting.
  • Pomalyst (pomalidomide)
    A type of immunomodulatory drug. It is in the same class of drugs as Revlimid and Thalomid.
  • Precursor cell
    Earlier form of a cell; for example, B cells are precursors of plasma cells.
  • Prednisone
    Type of steroid used to treat myeloma. It is frequently given in combination with a chemotherapy drug called melphalan.
  • Priority Review
    Designation assigned to a drug or product by the Food and Drug Administration (FDA) stating that the FDA will review the application for approval within a target date of 6 months rather than the standard review target date of 10 months. A Priority designation is intended for drugs and products that address unmet medical needs.
  • Prognosis
    The forecast or likely outcome of a disease. A patient’s prognosis is usually based on the extent of disease as noted by the existence of different signs, symptoms and circumstances, and clinical or laboratory findings.
  • Prognostic indicator
    Clinical or laboratory finding that helps determine prognosis. In myeloma, a prognostic indicator may help determine how fast the tumor is growing, the extent of disease, tumor cell biology, response to therapy, overall health status of the patient and when treatment should begin.
  • Progression-free survival (PFS)
    The length of time during and after treatment in which a patient is living with a disease that does not get worse; also referred to as disease-free survival.
  • Progressive disease
    Active myeloma that is worsening (i.e., increasing M protein and worsening end organ damage). In most cases, relapsed and/or refractory disease can be considered to be progressive disease.
  • Proteasome
    Complex of enzymes found within cells that play a key role in the regulation of cell function and growth. Proteasomes break down and clear out proteins after they’ve done their job and are no longer needed. Myeloma cells appear to be particularly dependent on proteasomes to grow and survive, and they can undergo programmed cell death (apoptosis) if proteasome activity is blocked by a proteasome inhibitor such as Velcade, Kyprolis or Ninlaro.
  • Protocol
    Action plan for a clinical trial that includes detailed description of patients who may join the trial, the therapy that will be given and the care the patients will receive during and after the trial.
  • Pulmonary embolism
    A sudden blockage in a lung artery, usually due to a blood clot that traveled to the lung from a vein in the leg. This is a very serious condition which may be life-threatening.

  • r

  • Radiopharmaceutical
    A radioactive drug used for diagnostic or therapeutic purposes.
  • Radiotherapy
    Radiation therapy; the use of high-energy particles or rays to damage cancer cells and prevent them from growing.
  • Randomization
    Method used to prevent bias in research studies; a computer or a table of random numbers generates treatment assignments, and participants have an equal chance to be assigned to one of two or more groups (e.g., the control group or the investigational group).
  • RANK L (also known as RANK Ligand)
    Substance produced by bone marrow stromal cells and bone-forming osteoblasts that induces the development and growth of osteoclasts and contributes to the bone disease of myeloma. RANK L is blocked by Xgeva, a monoclonal antibody therapy approved in myeloma, that reduces skeletal related events.
  • Red blood cell (RBC)
    Oxygen-transporting blood cell.
  • Refractory disease
    Myeloma that does not respond to the first therapy given and the number of myeloma cells continues to increase despite treatment.
  • Relapsed disease
    Myeloma disease that initially responded to therapy but then begins to progress again.
  • Remission
    Period during which no evidence of disease is present.
  • Renal Impairment
    Reduced kidney function. A type of protein called creatine, found in the blood, is used to monitor kidney function.
  • Response
    A decrease in the amount of myeloma cells as a result of treatment. Response is commonly measured by the amount of M protein in the blood or urine.
  • Response Rate or Overall Response
    The total percentage of patients who respond to a specific therapy in a clinical trial.
  • Responsive disease
    Myeloma that is responding to therapy with a decrease in M protein of at least 50%. Some myeloma groups consider a decrease in M protein between 25% and 50% to be a minimal response.
  • Revlimid® (lenalidomide)
    Oral drug with multiple anti-myeloma effects. Revlimid has been shown to be effective in newly diagnosed and relapsed or refractory myeloma alone and in combination with other drugs. It is chemically similar to an older myeloma drug called Thalomid® (thalidomide).

  • s

  • Salvage therapy
    Second-line therapy; used to treat disease that has not responded to initial therapy or relapsed disease.
  • Serum protein electrophoresis (SPEP)
    Test used to measure the levels of various proteins in the blood or serum. Uses an electrical current to sort proteins by their charge and size.
  • Smoldering multiple myeloma (SMM)
    Type of asymptomatic myeloma representing about 5% of cases and noted by monoclonal protein and slightly increased numbers of plasma cells in the bone marrow. Patients with SMM are monitored and currently only treated if their disease progresses.
  • Special Protocol Assessment (SPA)
    Procedure by which the U.S. Food and Drug Administration (FDA) evaluates and provides guidance on proposed protocols for pivotal Phase III clinical trials. The SPA provides the trial sponsors with a binding written agreement that the design and analysis of the study are adequate to support an application submission if the study is performed according to the SPA.
  • Stable disease (SD)
    Treatment outcome where the disease has not responded to therapy but has not progressed. It also refers to disease that initially responded to therapy and remains stable after treatment is stopped.
  • Stage I disease
    Myeloma disease classification based on the Revised International Staging System (R-ISS). Patients with Stage I disease have: ß2-M less than or equal to 3.5mg/L and albumin greater than or equal to 3.5 g/dL, Absence of higher-risk DNA [deletion(17p) and/or translocation t(4;14) and/or translocation t(14;16)], Normal blood levels of lactate dehydrogenase (LDH)
  • Stage II disease
    Myeloma disease classification based on the Revised International Staging System (R-ISS). Patients with Stage II disease have: Neither Stage I nor Stage III disease
  • Stage III disease
    Myeloma disease classification based on the Revised International Staging System (R-ISS) Patients with Stage III disease have: ß2-M greater than or equal to 5.5mg/L and either , Presence of higher-risk DNA abnormalities [deletion(17p) and/or translocation t(4;14) and/or translocation t(14;16)] or High blood levels of LDH
  • Standard-dose chemotherapy
    Administration of chemotherapy at a dose that does not completely destroy the bone marrow; also known asAdministration of chemotherapy at a dose that does not completely destroy the bone marrow; also known as conventional chemotherapy.conventional chemotherapy.
  • Standard of care
    Treatment that experts agree is appropriate, accepted and widely used; also called standard therapy or best practice.
  • Standard risk disease
    Indicates myeloma with an average prognosis.
  • Standard therapy
    Treatment that has been shown to be safe and effective in clinical studies and is adopted as standard practice outside of clinical trials.
  • Stem cell
    Parent cell that grows and divides to produce red blood cells, white blood cells and platelets. Found primarily in the bone marrow, but also in the peripheral blood.
  • Stem cell transplant
    Therapeutic procedure in which bone marrow or peripheral blood stem cells are collected, stored and infused into a patient following high-dose chemotherapy to restore blood cell production.
  • Stevens-Johnson syndrome
    A rare, but very serious type of rash, resulting from an allergic reaction. It has been rarely documented in patients who received Revlimid. It requires immediate medical attention.
  • Stomatitis
    Mouth sores.
  • Stringent complete response
    A treatment outcome where there are no detectable plasma cells in the bone marrow or myeloma proteins in the serum or urine using very sensitive techniques. A test known as free light chain ratio is also normal.
  • Stromal cell
    Structural cells of the bone marrow that help support and nourish the blood-producing cells.
  • Supplemental New Drug Application (sNDA)
    Compilation of information on the safety and efficacy of a marketed drug that is submitted to the FDA in order to request approval to market the drug for another indication.
  • Supportive care
    Treatment that addresses the symptoms and complications of a disease rather than the disease itself. Examples in myeloma include bisphosphonates, growth factors (i.e., erythropoietin), antibiotics, orthopedic interventions and pain control measures.
  • Synergistic
    Acts in combination with another agent such that the activity is greater than the simple additive effect of the two agents.
  • Syngeneic stem cell transplant
    Procedure in which bone marrow or peripheral blood stem cells from a patient’s identical twin are collected, stored and infused into the patient following high-dose chemotherapy or radiation therapy.

  • t

  • T cell
    Type of lymphocyte (immune cell) that plays an important role in immune responses and targeted cell killing, also known as a T lymphocyte.
  • T lymphocyte
    Type of lymphocyte (immune cell) that plays an important role in immune responses and targeted cell killing, also known as a T lymphocyte.
  • Tandem transplant
    Type of transplantation technique where a patient receives two planned transplants within a short period of time. Patients may receive 2 autologous transplants or an autologous stem cell transplant followed by a mini-transplant two to four months afterward.
  • Teratogenic
    Relating to or causing birth defects.
  • Thalomid (thalidomide)
    Older oral drug with multiple anti-myeloma effects. Thalomid has been shown to be effective in newly diagnosed and relapsed or refractory myeloma alone and in combination with agents such as dexamethasone. It is chemically similar to  Revlimid®.
  • Thrombocytopenia
    Decrease in the number of platelets (small cell fragments in the blood that help it to clot). A low level of platelets may increase the chance of bleeding.
  • Time to progression (TTP)
    A measure of time after a disease is treated until the disease starts to get worse or progress.
  • Tissue-type plasminogen activator (t-PA)
    Enzyme that helps dissolve blood clots and inhibits angiogenesis.
  • Toxic epidermal necrosis (TEN)
    A rare but life-threatening skin reaction, where skin turns very red and peels off, similar to what you would see with a severe burn. It typically occurs as a side effect to certain drugs but may also appear as a result of infection or suppression of the immune system.
  • Translocation
    An abnormal change in the DNA where two segments of different chromosomes switch positions.
  • Treatment cycles
    The period in which treatment is given (e.g., 21 days or 28 days). It is usually followed by a rest period in between treatments. 
  • Tumor-induced hypercalcemia (TIH)
    Condition occurring in various forms of cancer noted by elevated levels of calcium in the blood due to increased bone destruction; also known as hypercalcemia of malignancy (HCM).
  • Tumor lysis syndrome
    A condition that can occur during cancer treatment when large numbers of cancer cells die; the breaking up of the cells and release of the material into the blood can cause organ damage.
  • Tumor microenvironment
    The normal cells, molecules and blood vessels that surround and feed a tumor cell. A tumor can change its microenvironment, and the microenvironment can affect how a tumor grows and spreads.
  • Tumor necrosis factor-alpha (TNF-a)
    Cytokine with several effects in myeloma, including promotion of the growth of myeloma cells and activation of osteoclasts.

  • u

  • Urinalysis
    Test that determines the level of protein and various chemical compounds in the urine.
  • Urine electrophoresis (UEP)
    Test used to detect and measure the levels of various proteins in the urine, especially Bence-Jones protein. Uses an electrical current to sort proteins by their size.

  • v

  • VAD
    An older type of chemotherapy treatment. It consists of the combination of two chemotherapy drugs (Vincristine, Adriamycin) plus dexamethasone, a steroid.
  • Vascular endothelial growth factor (VEGF)
    One of the major growth factors that promotes the growth of new blood vessels (angiogenesis).
  • Velcade® (also known as bortezomib)
    A highly effective myeloma drug, known as a proteasome inhibitor. It is usually given subcutaneously either alone or in combination with other myeloma drugs.
  • Vertebroplasty
    Procedure used to treat spinal compression fractures whereby cement is injected into the affected vertebrae to stabilize it.
  • Very good partial response (VGPR)
    Treatment outcome where there is a greater than 90% decrease in M protein; also known as very good partial remission.
  • Vincristine
    A type of chemotherapy which is given intravenously (into a vein). It is part of an older type of myeloma treatment. See VAD. 

  • w

  • White blood cell (WBC)
    One of the major cell types in the blood that is responsible for immune defenses; also called a leukocyte.

  • z

  • Zofran® (ondansetron)
    A type of medicine used to prevent or treat nausea and vomiting as a result of cancer treatment. It is given either orally or intravenously (into a vein). 
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Revised International Staging System (R-ISS) Criteria

Stage Criteria
I ß2-M less than or equal to 3.5mg/L and albumin greater than or equal to 3.5 g/dL
Absence of higher-risk DNA abnormalities
Normal lactate dehydrogenase (LDH)
II Not Stage I or III
III ß2-M greater than or equal to 5.5mg/L and either
Presence of higher-risk DNA abnormalities or
High LDH
ß2-M = beta2-microglobulin
Higher-risk DNA abnormalities include del(17p) and/or translocation (t4;14) and/or translocation (14;16)
LDH = lactate dehydrogenase

Measuring your prognosis

Test Indication Values Indicating a More Favorable Prognosis
Beta 2-microglobulin (β2-microglobulin or β2-M) Higher levels reflect more extensive disease and poor kidney function. <3.5 mg/mL
Albumin level Higher levels may indicate better prognosis. ≥3.5 g/dL
Lactate dehydrogenase (LDH) level Higher levels indicate more extensive disease. Age ≤60yrs.: 100-190 U/L
Age >60yrs.: 110-210 U/L
Freelite® serum free light chain assay Abnormal results may indicate poor prognosis (also indicates risk of progression of MGUS or asymptomatic myeloma to symptomatic myeloma). Free light chain ratio MGUS: 0.26-1.65
Asymptomatic myeloma: 0.125-8.0
Symptomatic myeloma: 0.03-32
Chromosome analysis (cytogenetic testing by either karyotyping or FISH) Presence of specific abnormalities may indicate poor prognosis. Absence of abnormalities
Gene expression profiling Presence of specific group of genes can predict low or high risk of early relapse. Personalize risk score

Patient Webinar

Webinar Topic Date
Learn Your Labs Tuesday, February 4, 2020 1:00PM ET View Recording View Slides
Supportive Care Wednesday, March 4, 2020 1:00PM ET View Recording View Slides
Smoldering Myeloma Thursday, April 23, 2020 1:00PM EDT View Recording

Accredited activities

Topic Date Link
Treatment Options for Patients Who Have Relapsed From or Are Refractory to Multiple Therapies Live Webinar - Thursday, August 20, 2020 8:00PM EDT Learn More
Immunotherapy for Multiple Myeloma: From Antibodies to CAR T-Cell Therapy Live Webinar - Thursday, September 17, 2020 9:00AM EDT Learn More
Current Obstacles in Myeloma Management: Debating the Evidence Expires: January 25, 2021 Learn More
Ace the Case: A 68-Year-Old Woman With Progressive Back Pain, Anemia, and Proteinuria Expires: July 28, 2021 Learn More

Patient toolkit

Program Chair(s) Date Location of Event Access Link
Program Chair Robert Z. Orlowski MD, PhD Elisabeth E. Manansanch, MD May 21, 2020 Virtual View Recording View Slides

Patient toolkit

Title Download Links
Managing Myeloma Resource Brochure English Spanish
Multiple Myeloma Disease Overview English Spanish
Multiple Myeloma Treatment Overview English Spanish
Multiple Myeloma Caregiver Guide English Spanish
Precision Medicine Brochure English Spanish
Immunotherapy English Spanish

Register to speak to a myeloma mentor



Let’s connect

Contact the MMRF with any questions or comments—whether you are a patient, caregiver, researcher or clinician, we are always glad to hear from you.



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Revised International Staging System for multiple myeloma

Stage Criteria
I ß2-M<3.5mg/L and albumin ≥3.5 g/dL and Absence of high-risk DNA abnormalitiesaand Normal lactate dehydrogenase (LDH)
I Not Stage I or III
III ß2-M≥5.5mg/L and
Presence of high-risk DNA abnormalitiesaor
High LDH
ß2-M = beta2-microglobulin
aHigh-risk DNA abnormalities include del(17p) and/or translocation t(4;14) and/or translocation t(14;16)

Measuring your prognosis

Test Indication Values Indicating a More Favorable Prognosis
Beta 2-microglobulin
(β2-microglobulin or β2-M)		 Higher levels reflect more extensive disease and poor kidney function <3 mg/mL
Albumin level Higher levels may indicate better prognosis ≥3.5 g/dL
Lactate dehydrogenase (LDH) level Higher levels indicate more extensive disease Age ≤60yrs.: 100-190 U/L
Age >60yrs.: 110-210 U/L
Albumin level Higher levels may indicate better prognosis ≥3.5 g/dL
FreeliteTM serum free light chain assay Abnormal results may indicate poor prognosis (also indicates risk of progression of MGUS or asymptomatic myeloma or symptomatic myeloma Free light chain ratio MGUS: 0.26-1.65
Asymptomatic myeloma:0.125-8.0
Symptomatic myeloma:0.03-32



International Data Transfers

Adequacy Decision:  We may transfer your Personal Data to Switzerland and other countries which the European Commission has approved as providing adequate protection to personal data.  A list of these countries can be found here:

Standard Contractual Clauses:  The European Commission has adopted standard data protection clauses, which provide safeguards for personal data transferred outside of the EEA. We sometimes use Standard Contractual Clauses when transferring Personal Data from a country in the EEA to a country outside the EEA. You can request a copy of our Standard Contractual Clauses by contacting us as set forth in the Contact Us section below.

With your consent:  In respect of certain cross-border personal data transfers, such as in research studies that you provide consent to enter, we will obtain your consent to transfer your Personal Data outside the EEA after first informing you about the possible risks of such a transfer.

By contract:  We will transfer your Personal Data outside the EEA if the transfer is necessary to the performance of a contract between you and MMRF, or if the transfer is necessary to the performance of a contract between MMRF and a third party, and the contract was entered into in your interest.

In addition, we may transfer your Personal Data outside the EEA if the transfer is necessary to establish, exercise or defend legal claims or to protect your vital interests.  

Weekly COVID-19 Updates for Patients

To keep multiple myeloma patients informed on the latest updates during the COVID-19 pandemic, Drs. Hearn Jay Cho, Saad Z. Usmani, and Zainab Shahid are leading eight weekly 30-minute webcasts. Each webcast will focus on a specific topic and feature guest speakers to present important information and address questions and concerns regarding the COVID-19 pandemic.

Note: You only need to register once to be able to participate in any (or all!) of the eight webcasts.

Topics include:

  • Basics of COVID-19 disease (testing, treatment, and trials)
  • Preventative measures
  • Impact on treatment for newly diagnosed myeloma patients (for example, transplant deferment)
  • Impact on treatment for relapsed patients and clinical trial availability
  • Supportive care measures for patients (including bone health, intravenous immunoglobulin therapy, vaccinations, and more)
  • Social support, institutional, regional, and national foundations
  • COVID-19 database and specimen collection efforts
  • Personal perspectives on COVID-19 infection

Join us every Tuesday from June 2nd - July 21st at 6:00PM EDT

Register Now

High Impact Topics Videos

High impact topic videos, or HITs, are videos that use engaging animations and narration to present information on topics of importance to myeloma patients and their caregivers. Presented in a patient-friendly manner and viewable on iPads, tablets, and smartphones, these HITs bring to life and explain concepts that can sometimes be difficult for patients and caregivers to understand.

The MMRF wishes to thank the following reviewers and contributors to these HITs: Craig Emmitt Cole, MD; Ola Landgren, MD, PhD; Louise Miller Lavin, BSN, MSN, LPCC; Joshua Richter, MD; Nina Shah, MD.

Title Description
MRD (Minimal residual disease) Learn what MRD is, how it is measured, and what it might mean if your doctor tells you that you are MRD positive or MRD negative.
Immunotherapy Understand how your immune system interacts with your myeloma, and how new immunotherapies are helping patients’ immune systems recognize and destroy myeloma cells.
Genomics Hear how doctors can use genomic information from your myeloma cells to provide therapy that is tailored to your myeloma subtype.
Learn Your Labs This video provides information on laboratory tests that myeloma patients may undergo. Learn about why and how the tests are done and what the results mean.

Patient Summits

Program Chair(s) Date Location of Event
Larry D. Anderson, Jr., MD, PhD
Ankit Kansagra, MD		 March 21, 2020 Virtual View Recording View Slides
Andrzej Jakubowiak, MD, PhD
Craig Emmit Cole, MD
Craig C. Hofmeister, MD, MPH
Saad Z. Usmani, MD		 August 1, 2020 Virtual View Recording View Slides

Expert Sessions

Program Chair(s) Date Location of Event
Robert Z. Orlowski MD, PhD
Elisabeth E. Manansanch, MD		 May 2, 2020 Virtual View Recording View Slides
Jonathan L. Kaufman, MD
Sagar Lonial, MD		 September 26, 2020 Virtual Register

Patient Webinars

Webinar Topic Date
Learn Your Labs Tuesday, February 4, 2020 1:00PM EDT View Recording View Slides
Supportive Care Wednesday, March 4, 2020 1:00PM EDT View Recording View Slides
Smoldering Myeloma Thursday, April 23, 2020 1:00PM EDT View Recording View Slides
Managing Myeloma During the COVID-19 Pandemic Wednesday, May 20, 2020 1:30PM – 2:30PM EDT View Recording View Slides
Multiple Myeloma Highlights From the 2020 American Society of Clinical Oncology (ASCO) Annual Meeting Tuesday, June 16, 2020 1:00PM – 2:00PM EDT View Recording View Slides
The Latest Updates on CAR T-Cell Therapies Thursday, July 30, 2020 1:00PM - 2:00PM EDT View Recording View Slides
The Latest Updates on Minimal Residual Disease Wednesday, August 19, 2020 1:00PM - 2:00PM EDT Register
Autologous Stem Cell Transplantation for Multiple Myeloma Wednesday, September 16, 2020 1:00PM - 2:00PM EDT Register

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Michael Reinert

Partner
Fox Rothschild LLP

Michael Reinert is a leading music industry attorney who most recently served as Executive Vice President of Business & Legal Affairs for the Universal Motown Republic Group, a division of UMG Recordings, Inc. In that position, he had the pleasure of working with great talent such as Stevie Wonder, Elton John, Taylor Swift, Amy Winehouse, Lil Wayne, Nelly, Jack Johnson and many other platinum selling acts.

Prior to joining Universal ten years ago, Michael was the Vice President of Business & Legal Affairs for PolyGram Records, handling those duties for the legendary Verve Records label and Mercury Nashville Records where he worked with the likes of Herbie Hancock and Shania Twain. Michael started his career in private practice representing many artists, producers and writers before joining the corporate ranks.

Michael was an Adjunct Professor of Law at his alma mater, The Benjamin Cardozo School of Law of Yeshiva University, for ten years teaching Contract Drafting and Negotiation in the Music Industry. He has been a contributing editor to the Practicing Law Institute volumes on the same subject and continues to lecture at various schools and seminars around the country.

He currently serves as the Chairman of the Entertainment Law Initiative of the Grammy Foundation, a division of the National Academy of Recording Arts and Sciences, which focuses on legal education programs for aspiring entertainment attorneys.

Michael attended the Horace Mann School for Boys in Riverdale and Tulane University in New Orleans, a place he considers his second home. He lives in Manhattan with his wife of 30 years, Karen. They have a daughter and two beautiful grandchildren.

Rodger Riney

Former CEO and Founder
Scottrade

Rodger Riney grew up in Kirkwood, Missouri, and graduated from the University of Missouri with a Civil Engineering degree and an MBA.

In 1969, he joined Edward D. Jones & Co. in Saint Louis and later became a partner. In 1980, he left to enter the relatively new discount brokerage industry by starting Scottrade. Over the years, Scottrade evolved into an online brokerage and bank supporting its 3 million clients through 500 branch offices nationwide.

In the fall of 2015, Rodger was diagnosed with multiple myeloma and in late 2017, Scottrade was sold to TD Ameritrade.

Steven Shak, MD

Co-Founder, Chief Scientific Officer
Genomic Health

Dedicated to optimizing cancer treatment outcomes and bringing the patient voice into product development, Steve Shak, M.D. has served as the Co-Founder and Chief Scientific Officer of Genomic Health since 2012, and was the Chief Medical Officer from 2000 – 2013. Under Steve’s leadership Genomic Health used innovative molecular diagnostic methods and rigorous clinical studies to develop the Oncotype DX® breast cancer and colon cancer assays and has maintained an 80% product development success rate. Steve has been a leader in personalized medicine for more than two decades.

Prior to co-founding Genomic Health in 2000, Steve served for 14 years in various roles in Discovery Research and Medical Affairs at Genentech, Inc., a biotechnology company dedicated to using human genetic information to discover, develop, manufacture and commercialize medicines to treat patients with serious or life-threatening medical conditions. Steve led the clinical team that gained approval for Herceptin®, a targeted biologic treatment for breast cancer. He also initiated the cancer clinical trials of the anti-angiogenesis agent, Avastin®.

In addition, Steve discovered Pulmozyme®, a mucus-dissolving enzyme that is approved worldwide for the treatment of the genetic disease cystic fibrosis.

Prior to joining Genentech, Steve was an Assistant Professor of Medicine and Pharmacology at New York University School of Medicine.

Steve holds a Bachelor of Arts degree in Chemistry from Amherst College and an M.D. from New York University School of Medicine, and completed his post-doctoral training at University of California, San Francisco.

Meryl Zausner

Former Chief Financial Officer
Novartis Corporation

Meryl Zausner has over 35 years of management experience across the pharmaceutical and consumer products industries. Meryl was instrumental in creating the blueprint for the successful Novartis Oncology Business Unit and engineering the launch of the first Novartis shared services organization.  A recognized developer of diverse talent, The Healthcare Businesswomen Association honored Meryl with its prestigious Woman of the Year Award.

For much of her corporate career, Meryl worked at Novartis AG, the Swiss pharmaceuticals company, in roles of increasing responsibility across diversified businesses. From April 2012 through 2014, Meryl was Chief Financial and Administrative Officer of Novartis Pharmaceuticals Corporation in the US, and a member of the Pharmaceutical Executive Committee and Global Finance Leadership Team. While in this role, Meryl also resumed responsibility as Chief Financial Officer and Executive Vice President of Novartis Corporation in the US.

Acknowledging her strong leadership and broad achievements, Novartis selected Meryl to train and serve as a certified Executive Coach to senior executives, a position she held from May 2015 until her retirement at the end of June 2017.  She has a BS in Economics and Accounting from the University at Albany and her CPA.

Meryl is a Board member and Chair of the Audit Committee of the Multiple Myeloma Research Foundation, and Board member of Deirdre’s House, an advocacy center for children who are victims of abuse or neglect.  Former board positions include HBA Advisory Board, PhRMA Audit and Finance Subcommittee member, and the T.J. Martell

Foundation. PharmaVoice magazine recognized Meryl among its Most Inspiring, and she received Gilda Club’s Red Door Honoree. Meryl resides with her husband in Naples, Florida and Long Branch, New Jersey.

Sarah Coulter

RN, OCN

Sarah has been a registered nurse for the past five years, specializing in Hematology Oncology and Bone Marrow Transplant. She has spent over ten years in the Oncology field and started her career at Yale New Haven Hospital. Over the last three years, Sarah worked as a traveling nurse in California, South Carolina, Florida, Texas and Maryland. She earned her nursing degree from St. Vincent’s School of Nursing. She is chemotherapy certified and is currently in school to obtain her master’s degree in nursing education.

 

Kristen Donadio

RN, BSN

Kristen has been a registered nurse for a little over 20 years. She spent the last 18 of those years working at the John Theurer Cancer Center (JTCC) in various nursing positions in both the Myeloma and Bone Marrow transplant clinics. Her last 2 years at JTCC were spent as the Administrative Supervisor of the Myeloma Division. She graduated from Stockton University with a degree in Public Health Administration, followed by an Accelerated Bachelor’s of Science in Nursing degree from Fairleigh Dickinson University. She is a member of the Oncology Nursing Society and she holds a certification in chemotherapy/biotherapy/immunotherapy administration. She is currently working towards her master’s degree in Healthcare Administration.

Greg Rubenstein - Vice President of Marketing and Communications

Greg Rubenstein is the VP of Marketing & Communications at the MMRF, where he leads all brand marketing strategy and execution in support of the organization.

Prior to joining the MMRF, Greg spent the majority of his career working for Advertising firms like Grey NY, Saatchi & Saatchi, FCB Health, and Deutsch -- servicing clients across a wide variety of sectors, including Healthcare, Technology, Financial Services, and Consumer Packaged Goods. He has brought to market countless products and campaigns over nearly 20 years, including high-profile healthcare launches in Vaccines and Women’s Health. In 2013 he joined a technology startup called Vettery, where he helped to launch the brand and all of its communications while serving as the company’s Chief Client Officer & lead brand strategist.

Greg is a graduate of Cornell University, with a B.S. in Psychology & Human Development. He resides in Irvington, NY with his wife and two sons.

Mindy Flinn, MBA – Vice President of Development

Mindy Flinn joined the MMRF in May 2020 as the Vice President of Development where she works with a talented team raising philanthropic support for the organization. She brings over 23 years of development experience to this position. Ms. Flinn spent over a decade in development at Mayo Clinic in Rochester, MN and in Jacksonville, FL, where she oversaw the stewardship of top-level benefactors and served as a major gift officer. She also worked for the LIVESTRONG Foundation in Austin, TX as a major gift officer and was Director of Philanthropic Resources at MD Anderson Cancer Center in Houston, TX. Prior to joining the MMRF, she was Senior Director of Development at Yale School of Medicine. Ms. Flinn received her Bachelor of Science in Biology from Bethel University and a Master of Business Administration from Cardinal Stritch University. Her additional accomplishments include successfully climbing Mt. Kilimanjaro in 2012 as a member of Survivor Summit and skydiving. 

Grace Allison

RN, BSN, OCN, RN-BC

Grace has been a registered nurse for more than 30 years. She spent the last 28 years working at one of the largest myeloma programs in the U.S., the University of Arkansas for Medical Sciences (UAMS). She was fortunate to have spent her career at UAMS under the tutelage of one of the most well known myeloma physicians, Dr. Bart Barlogie. She received her nursing education in Ireland, and completed a bachelor’s of nursing degree at the University of Arkansas. She is a member of the Oncology Nursing Society and a nationally Oncology Certified Nurse. She is also a board certified medical-surgical registered nurse (RN-BC).

Hearn Jay Cho, MD, PhD - Chief Medical Officer 

Hearn Jay Cho, MD, PhD joined the MMRF as Chief Medical Officer (CMO). Dr. Cho is responsible for developing the MMRF’s clinical research strategy and accelerating drug development programs as well as for leading the Multiple Myeloma Research Consortium (MMRC), a group of 25 leading research centers dedicated to researching and advancing treatment options for multiple myeloma patients.

Hearn Jay Cho is an Associate Professor of Medicine at the Icahn School of Medicine at Mt. Sinai and an Attending Physician with the Multiple Myeloma Service at the Mt. Sinai Tisch Cancer Institute. Dr. Cho’s laboratory is investigating novel therapies for multiple myeloma in two areas.

First, they are investigating immunologic therapies with a focus on using cutting edge genomic and immunologic assays to map the interaction between myeloma and the immune system in the tumor microenvironment. These projects illuminate the mechanisms of action of novel immune therapies in both laboratory models and clinical trials and will inform the design of rational combinations. This program has a special focus on immunologic therapy in the setting of autologous stem cell transplantation for myeloma.

Second, Dr. Cho’s group discovered that two of the type I Melanoma Antigen GEnes (MAGE), MAGE-A3 and MAGE-C1, are commonly expressed in multiple myeloma and are correlated with progression of disease and proliferation. They demonstrated that type I MAGE plays a critical role in conferring resistance to chemotherapy and inhibition of apoptosis in myeloma cells through regulation of Bcl-2 family proteins and the tumor suppressor p53. Dr. Cho’s group is conducting biochemical and structural studies to identify novel pharmacologic strategies for inhibition of type I MAGE activity in myeloma.

 

 

Marie E. Pinizzotto, M.D., MBA

President and CEO
Carol A. Ammon Foundation

Marie E. Pinizzotto, M.D., MBA  is currently the President and CEO of the Carol A. Ammon Foundation, a foundation focused on health care and education. Prior to running the foundation she was president of Drug Safety Solutions, L.L.C., a Pharmacovigilance and Risk Management consulting company whose main focus was narcotics and other high-risk drugs. Dr. Pinizzotto also worked at Endo Pharmaceuticals Inc. where she was Senior Director of the Global Safety and Pharmacovigilance department. In this role she was responsible for pharmacovigilance of all Endo products, marketed and investigational. Marie was also responsible for the safety components in the following disciplines; Clinical Research, Medical Affairs and Clinical Education and Development. She led the Risk Management Team and was responsible for the creation and implementation of Endo’s risk management programs.

Before working at Endo, she was a Senior Director of Report Evaluation and Safety Surveillance for the Women’s Health Division and Consumer Products at Wyeth. She was responsible for drug safety and the pharmacovigilnce of Wyeth products.

Dr. Pinizzotto received her B.S. in Chemistry, magna cum laude, from the University of Pittsburgh, Pittsburgh Pennsylvania and her medical degree from Jefferson Medical College in Philadelphia (Now Sidney Kimell College of Medicine). She completed her residency at The Medical Center of Delaware (now Christiana Care), where she practiced obstetrics and gynecology. Most recently, Dr. Pinizzotto earned her MBA at the University of Delaware.

Currently Dr. Pinizzotto is the named Chair of Obstetrics and Gynecology at Christiana Care Hospital, Newark, Delaware, and is also a trustee of the hospital. She is a member of the finance committee and was a member of the Quality and Safety Committee. In addition, she is a board member at Eisenhower Medical Center, Rancho Mirage, California, and also sits on the quality improvement committee. At Eisenhower she is named Chair; The Marie E. Pinizzotto, MD Chair of Academic Affairs. Dr Pinizzotto is also a director, The Carol A. Ammon Foundation and The Multiple Myeloma Research Foundation. In addition, she participates on the following advisory boards: Scientific Steering Committee on Personalized Medicine for the Multiple Myeloma Research Foundation, the Presidents Leadership Council of the University of Delaware, the Presidents Leadership Council at Jefferson Medical College, and the Advisory Board of Myeloma Institute at the University of Arkansas Medical System. In addition, she is one of the founding members of the MGH Leadership Council for Psychiatry at Massachusetts General.

David R. Parkinson, MD

Chairman of the Clinical Advisory Board
Zyngenia. Inc.

From 2007 until 2012, Dr. Parkinson served as President and CEO of Nodality, a South San Francisco-based venture-financed biotechnology company developing technologies to enable personalized medicine and more efficient drug development in cancer and autoimmune diseases.

Before joining Nodality, Dr. Parkinson was Senior Vice President, Oncology R&D, at Biogen Idec, overseeing oncology discovery research efforts and the development of the oncology pipeline. Previously he had served tenures as Vice President and Head of the Oncology Therapeutic Area at Amgen and Vice President and Head of Global Clinical Oncology Development at Novartis. During his tenures at Amgen and Novartis, Dr. Parkinson was responsible for clinical development activities leading to a series of successful global drug registrations for important cancer therapeutics, including Gleevec®, Femara®, Zometa®, Kepivance®, and Vectibix®.

He received his M.D. from the University of Toronto Faculty of Medicine in 1977, with Internal Medicine and Hematology/Oncology training at McGill University and at New England Medical Center. Dr. Parkinson has authored more than 100 peer-reviewed scientific papers, and is a past Chairman of the Food & Drug Administration (FDA) Biologics Advisory Committee as well as a recipient of the FDA’s Cody Medal.

Christopher Williams - Vice President of Business Development

 Christopher Williams was named Vice President of Business Development at the MMRF in 2017, responsible for business development, partnership and joint venture efforts for the foundation. He is a business development leader with a strong scientific background, specializing in the pharmaceutical and diagnostics space. Most recently he served as the VP of Business Development at WaveSense where he was in charge of their US commercialization strategy and product expansion, as well as being responsible for overseeing their strategic partner relationships.

Previously Chris was VP of Business Development at SkylineDx, providing commercialization strategy for their oncology portfolio. With PerkinElmer, as the Market Segment Leader in Oncology, he had responsibility for their cancer diagnostic products including strategy, launch activities, external presentations and marketing execution.

While at Millennium Pharmaceuticals, Chris held roles in the Protein Science, Technology Development and Proteomics groups. He also had scientific roles at Schering-Plough and the Sandoz Research Institute.

Chris holds graduate and post-graduate degrees in Microbiology/Molecular Biology and Protein Biochemistry from Clemson University. 

Steve Varley - Vice President, Development

Steve Varley joined the MMRF team in 2018 and is responsible for the fundraising efforts of the organization. Most recently he served as Associate Dean for Advancement at Yale University, leading the fundraising efforts for Yale School of Nursing. Previously he worked as the Vice President for Advancement at Gardner-Webb University where he organized and successfully executed the University’s most recent capital campaign. Steve received a BS degree from Chowan University and holds an MBA from Gardner-Webb University.

Laura Gilman - Vice President of Events

Laura Gilman is the Vice President of Events at the MMRF where she manages the entire events portfolio. Prior to joining the MMRF in 2010 Ms. Gilman was the Vice President of Citigroup’s Investment Research Conferences where she directed the design and execution of the bank’s high profile research conferences and events. Before joining Citigroup, Ms. Gilman was the Director of Meetings, Client Relations and Incentives at Victoria’s Secret Beauty. She began her career at Morgan Stanley managing the bank’s IPO Roadshows. Ms. Gilman has over 20 years of experience designing and executing events and initiatives that generate revenue. She received her B.A. in English Literature from the Catholic University of America and lives in Westport, CT with her husband and son.

Karen Dietz, JD, MBA - General Counsel and Secretary

Karen Dietz is General Counsel and Secretary for the MMRF. Karen joined the MMRF as Corporate Counsel and Secretary in 2007. She manages corporate governance, contract negotiations, compliance, and intellectual property for the MMRF and its subsidiary companies. In recent years, Karen has focused her efforts on the contracts and compliance for the MMRF CoMMpassSM Study, the MMRF Prevention Project, the MMRF Immunotherapy Initiative, and the MMRF CureCloud®. Additionally, Karen has concentrated efforts on optimizing the governance structure of the MMRF’s subsidiary companies: the Myeloma Investment Fund (MIF) and the Multiple Myeloma Research Consortium (MMRC). Karen has worked with the consortium sites and pharma companies to launch over 80 clinical trials including the first-ever myeloma platform trial, MMRC MyDRUG™. Karen earned her Doctorate of Jurisprudence and her Masters of Business Administration from Western New England University. Karen earned her Bachelor of Science in Justice and Law Administration from Western Connecticut State University.

Anne Quinn Young, MPH - Chief Marketing and Development Officer

Anne Quinn Young, MPH, is the Chief Marketing and Development Officer at the MMRF and is responsible for overseeing the strategy and execution of the organization’s marketing, communications, patient engagement, and fundraising efforts in support of the organization’s mission to accelerate precision medicine and a cure for every patient.  

Anne has been named to the PharmaVoice 100, and represents the MMRF on a number of working groups and committees including the Direct-to-Patient (DTP) solutions team at the Harvard Business School (HBS) Kraft Precision Medicine Accelerator and the Cancer Support Community Frankly Speaking About Cancer: Multiple Myeloma National Advisory Board. She has co-authored a number of peer-reviewed abstracts and publications on the MMRF Precision Medicine Model and identifying knowledge gaps and opportunities to improve patient empowerment and engagement in optimizing their own outcomes.

Prior to joining the MMRF in 2002, she was a consultant in the Healthcare Practice of Datamonitor, a global market research and business intelligence company. She previously worked in healthcare public relations at Burson-Marsteller and the Chandler Chicco Agency, following a postgraduate internship at the Department of Justice, Antitrust Division. Anne has a Masters of Public Health from the Mailman School of Public Health of Columbia University and graduated cum laude from Dartmouth College with a Bachelor of Arts in Government.

 

 

Rob Miani - Chief Financial Officer

Rob Miani joined the MMRF team as Chief Financial Officer in 2016. Most recently he was the Vice President of Finance and Corporate Controller of Aptuit, LLC, a global contract research organization providing integrated early discovery to mid-phase drug development services in the pharmaceutical industry. Rob has over 20 years of leadership experience in the private and public sectors, holding managerial positions in the renewable energy, private equity, Internet and technology industries, including Davenport Newberry, Oak Investment Partners and INT Media Group. He began his career with Arthur Anderson LLP in the Assurance and Business Advisory Services Division. Rob is a CPA and received his BS degree in Accounting from Fairfield University.

Steven Labkoff, MD, FACP, FACMI - Chief Data Officer 

Dr. Steven Labkoff is the Chief Data Officer at the Multiple Myeloma Research Foundation. Dr. Labkoff is a global medical leader with a track record of developing cutting edge strategies towards new healthcare delivery models. He has demonstrated success in the convergence of medicine, life sciences and policy across disparate organizations including government, non-government organizations (NGOs), health plans and academic institutions. He joined the MMRF after a 25-year career in healthcare informatics for the Life Science Industry where he worked on a wide array of issues ranging from the secondary uses of healthcare data for Life Sciences, health information technology policy, Big Data and analytics and medical affairs. He was most recently Executive Director, Medical Strategy at Purdue Pharma. In that role he led Purdue’s Big Data initiative as well as medical strategy for both pipeline and inline products. Prior to Purdue he was Vice President of Life Sciences at Intelligent Medical Objects focused on leveraging medical vocabularies, ontologies, and terminologies for Life Science customers.

From 2011-2014 he was Executive Director, R&D Informatics and Head of Strategic Programs in AstraZeneca’s Research & Development Information Department where he led groups on Real World Evidence and Payer Evidence, Personalized Medicine and Biomarkers and Clinical Trials Design and Interpretation, dedicated to leveraging healthcare data for the development of ethical pharmaceuticals.

Previously, Dr. Labkoff was an instructor of Medicine and Medical Informatics at Brigham and Women’s Hospital, Harvard Medical School. He completed a post-doctoral fellowship at Harvard Medical School and Massachusetts Institute of Technology in Medical Informatics where he focused on the uses of point-of-care computing and mHealth. He did his cardiology training at the University for Medicine and Dentistry of New Jersey, his medical training at the University of Pittsburgh and at the Albert Einstein Medical Center in Philadelphia. He is a Fellow of the American College of Physicians and the American College of Medical Informatics, and an executive board member of the American Medical Informatics Association.

 

Randi S.Randi S

51, from Fort Lauderdale, FL
Initially Diagnosed: 2016
Current Diagnosis: Relapsed, Refractory
Treatment Received: SCT, Cytoxan, Revlimid, Velcade

Upon Randi’s diagnosis, she conducted an abundance of research and tried to keep an optimistic mindset. She decided to pursue the treatment plan that had a more holistic approach, and if it came to a point in which she needed a transplant, she wanted to pick the environment that felt the most nurturing. Randi knew that there were many steps and lifestyle changes that she had to make towards her healing. Her diagnosis affected her in medicinal, environmental, holistic, mental, personal and spiritual ways. She continues to maintain her super healthy lifestyle and practices good dietary habits. It was difficult for Randi to believe that she had cancer, as she had to learn to recreate herself and was grateful to be alive. Randi is very active in the multiple myeloma community and participates in races all over the country. She told her doctors that she was willing to do her homework to propose to them ways in which she could slowly return to participating (to a certain degree) in some of her active hobbies and most importantly, she has learned to listen to her body.

Ethan H.Ethan H

28, from Worcester, MA
Initially Diagnosed: 2013
Current Diagnosis: In Remission, Multiple myeloma with solitary plasmacytoma
Treatment Received: Radiation, Bone replacement, SCT, VRD, Ninlaroe

I was diagnosed with multiple myeloma seven years ago at the age of 22. It started with pain in my hip that was quickly diagnosed as cancer. I understand the disruption to “normalcy” that a multiple myeloma diagnosis may have caused for you. I’ve made it my mission to make a difference for others dealing with this disease. This time period can be filled with uncertainty, but the thing that has always helped, whether it was the day of the diagnosis or currently, is the importance of having people in your life that are there for you.

Casey Joe W.Casey Joe W

36, from Acworth, GA
Initially Diagnosed: 2008
Current Diagnosis: In Remission
Treatment Received: Bone replacement, SCT, Velcade, Revlimid, Ninlaro

I was diagnosed with Multiple Myeloma when I was 26 years old. I was a bit lost at first because I was very young when I received this diagnosis, but I soon realized that everyone experiences it differently. Since my diagnosis, I’ve had to cut back on a lot of physical things I used to do, like exercising. I’ve learned how to manage my energy and put it towards things that matter most to me. I am very motivated to share my experiences with others battling this disease and hope to empower other patients during their journey.

Craig C.Craig C

58, from Alamo, CA
Initially Diagnosed: 2014
Current Diagnosis: Relapsed, Refractory
Treatment Received: Radiation, SCT, CAR-T, VRD, Pomalyst, Darzalex

I have been married for 35 years, with two grown sons ages 29 and 26 and am fortunate to have a very strong support system. I feel that the biggest challenge is adapting to a label of being a cancer patient. I stay positive with all the things I am able to do and love such as cooking, painting, drawing, snow skiing and cycling. 
Craig C.

Patti B.Patti B

58, from Boulder, CO
Initially Diagnosed: 2012
Current Diagnosis: Smoldering

Patti has smoldering myeloma and had no signs or symptoms of her disease when she was diagnosed. During her annual physical her bloodwork came back abnormal, so her physician ordered further testing. Patti is now in a study where some of the smoldering patients receive Revlimid for treatment and the remaining patients remain under observation without treatment. The test is to see if the medication will help eradicate the smoldering Multiple Myeloma. As a result of the study, Patti now gets blood tests every month and every year she will get a PET scan and bone biopsy to keep an eye on the status of her Multiple Myeloma.

Tricia C.Tricia C

59, from Rocky Hill, CT
Initially Diagnosed: 2014
Current Diagnosis: In Remission
Treatment Received: SCT, RVD, IVIG, Clinical Trial Participant

In 2005, Tricia was dealing with extreme fatigue. Her primary care physician ordered routine bloodwork and found that she was severely anemic. She was then sent to a local hematologist who did a bone marrow biopsy. At this time she was diagnosed with smoldering myeloma after receiving a second opinion. It wasn’t until 2014 that she was diagnosed with active Multiple Myeloma. Tricia participates in MMRF events in hopes of furthering multiple myeloma research. She enjoys sharing her personal experience with other myeloma patients and is looking forward to helping others understand this disease better and find resources for them that will help with their personal myeloma journey.

Anna Marie K.Anna Marie K

54, from Norwalk, CT
Initially Diagnosed: Husband JP in 2014
Current Diagnosis: Relapsed, Refractory

My husband, JP, was diagnosed with multiple myeloma six years ago at the age of 48. We do whatever we can to support the MMRF and to keep a positive mindset about our situation. It has been a journey from day one, but I feel we are confident going forward. I’m thrilled to be at this point in our lives to be able to help others. I’m so appreciative of the help we’ve received, and I’m grateful for this opportunity because we understand how this journey with multiple myeloma can be overwhelming.

Carmen P.Carmen P

52, from Little Silver, NJ
Initially Diagnosed: 2002
Current Diagnosis: Relapsed, Refractory
Treatment Received: Tandem SCT, Allogenic SCT, RVD, Clinical Trial Participant

Carmen’s experience leading up to her diagnosis was unique in that she did not present any symptoms and was diagnosed via pre-pregnancy bloodwork. It revealed that she had low platelets and was anemic. At the time, Carmen was diagnosed with smoldering multiple myeloma, as she did not meet the criteria to be diagnosed with active multiple. Carmen’s multiple myeloma status continued to be smoldering for a total of 8 years until December 2010. Carmen strives to stay positive and maintain a healthy and active lifestyle. She has persevered and embraces the changes that her diagnosis has caused in her life.

Andrew G.Andrew G

67, from Harrisburg, PA
Initially Diagnosed: 2013
Current Diagnosis: In Remission
Treatment Received: SCT, RVD, Revlimid for maintenance

Andrew’s biggest challenge after receiving his diagnosis was educating himself on this disease. His healthcare team embraced his determination to educate himself, which gave him additional confidence in his doctors. Andrew has kept a  positive outlook and is self-motivating. One motivating factor he had was retirement; although, he only wanted to semi-retire. He remains an active grandfather to his two young grandsons and helps his daughter by babysitting them. He feels that his multiple myeloma journey has made him a better person in that he is more compassionate and understanding.

Jessie D.Jessie D

54, from Vermillion, SD
Initially Diagnosed: 2016
Current Diagnosis: Smoldering
Treatment Received: None at this time

Jessie is determined to not let her diagnosis define her and dominate her life; therefore, she has taken control of the situation by continuing her research and education on her diagnosis and learning the importance of practicing self-awareness and self-advocacy for her own health. She has become dedicated in her efforts to incorporate being health-conscious in her lifestyle. Prior to her diagnosis, Jessie’s sense of self was connected to her career. Now, she's revisiting this and learning how to reinvent herself and the lifestyle she plans to lead.

Jeffery G.Jeffrey G

59, from Chicago, IL
Initially Diagnosed: 2010
Current Diagnosis: Relapsed, Refractory
Treatment Received: Tandem SCT, Ninlaro, Revlimid, Velcade, Pomalyst, Darzalex

Jeffery stresses the importance of staying motivated and positive. He manages his lifestyle and nutrition to do what he can to have a full and active life. He is determined to continue his active hobbies. Before and after his diagnosis, he has continued to participate in his hobbies as a marathon runner, hunter, fisherman, and hiker. He climbed Mt. Kilimanjaro earlier this year and is taking a summer vacation with his wife to Montana to backpack and hike. Doing the things he loves helps him feel empowered against his disease. He also has found strength in becoming an active member of the multiple myeloma community. Jeffery has been extensively involved in the "mother ship" of MMRF. Jeffery is passionate about raising awareness of MMRF and helping others navigate their way and to find their path.

Daniel Auclair, PhD – Chief Scientific Officer 

Dr. Daniel Auclair is the Chief Scientific Officer for the MMRF and has been with the organization for over a decade. He is responsible for oversight of the development and execution of the organization’s scientific plan. In addition, he is responsible for all the MMRF preclinical and translational activities. Dr, Auclair is also deeply involved in the Multiple Myeloma Research Consortium (MMRC), a network of 25 multiple myeloma centers of excellence across the U.S. through which 82 multiple myeloma clinic trials have been run to date.

Dr. Auclair was selected by PharmaVoice in 2017 as one of the 100 Most Inspiring People in the life-sciences industry. After completing his graduate studies in Montreal and postdoctoral fellowship at Dana-Farber Cancer Institute/Harvard Cancer Center where he conducted seminal multiple myeloma genomic work, Dr. Auclair then spent a decade in early cancer drug discovery in biotech/pharma, mostly at Bayer where he worked, among others, on overseeing the Bayer-Millennium cancer genomics drug collaboration as well as on Nexavar and Stivarga. He also worked at the Broad Institute of MIT and Harvard where as a senior manager in the Cancer Program he was involved in a wide range of academic and industry collaborations centered around cancer genomics and precision medicine initiatives. 

Michael Andreini – Chief Operating Officer

Michael Andreini joined the MMRF as the Chief Operating Officer in 2019, and is responsible for overseeing day-to-day operations, strategic programs, and alliances across the foundation.  Michael brings over 12 years of strategic consulting and operational experience in the life sciences industry.  Prior to joining the MMRF, Michael was an Associate Principal at IQVIA in the consulting services organization where he led complex engagements for biopharma, medical device, and non-profit organizations across diverse solution areas including commercial assessments, portfolio analysis, R&D and launch strategy, and operational execution.  Before joining IQVIA, Michael worked at Fuld & Company, a boutique consulting firm specializing in competitive intelligence and strategy, and prior to that, at Siemens Healthcare Diagnostics in the Global technical Operations group where he resolved technical issues for immunoassay reagents and systems.  Michael earned a B.A. in chemistry with a minor concentration in economics from Colgate University.

Paul Giusti – President and Chief Executive Officer 

Paul Giusti is the President and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). Prior to the MMRF, Mr. Giusti worked as a Chief Executive Officer, leader, executive and entrepreneur for over 30 years; he has founded, managed and led a variety of businesses. Early in his career, Mr. Giusti worked as an executive for GE where he held a number of management positions with a wide range of responsibilities.

Mr. Giusti has worked closely with the MMRF since its founding in 1998. In addition to chairing the successful $100 million capital campaign, he has served as a consultant for a number of foundation projects, led several MMRF outreach efforts and spoken on behalf of the MMRF.

Mr. Giusti holds a Bachelor of Science degree from the Colorado School of Mines and an MBA from Harvard University.

Learn more about Kathy

Kathy Giusti – Founder and Chief Mission Officer 

Faculty Co-Chair, HBS Kraft Precision Medicine Accelerator
Harvard Business School

Kathy Giusti, a multiple myeloma patient, is the Founder of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). She is also the Chief Mission Officer of the MMRF. Kathy is the Henry & Allison McCance Family Senior Fellow at Harvard Business School, where she serves as Faculty Co-Chair of the HBS Kraft Precision Medicine Accelerator. Kathy has more than two decades of experience in the pharmaceutical industry, previously holding senior positions at G.D. Searle and Merck.

Since founding the MMRF in 1998, Kathy has become a widely respected leader in establishing innovative, collaborative research models in the areas of tissue banking, genomics, and clinical trials. These models are dramatically accelerating the pace at which lifesaving treatments are brought to patients and are building an end-to-end solution in precision medicine. Today, she is recognized as a pioneer of precision medicine, a champion of data sharing, and a strong advocate for patient engagement.

In 2016, Kathy was named Faculty Co-Chair of the Harvard Business School (HBS) Kraft Precision Medicine Accelerator, a $20 million program endowed by Robert Kraft and the Kraft Family Foundation. Under her leadership, the HBS Kraft Precision Medicine Accelerator convenes best-in-class leaders from science, business, and technology to identify and solve challenges slowing the advancement of precision medicine. The HBS Kraft PM Accelerator disseminates best practices and models to overcome these challenges, and ultimately enables faster adoption of high-impact innovations.

Kathy has earned numerous prestigious awards and recognitions, including being named 1 of 3 Top Business Leaders Disrupting Medicine by Fortune Magazine and #19 on Fortune’s World’s 50 Greatest Leaders list. She was also named one of the world’s 100 Most Influential People by TIME magazine. Kathy received the Open Science Champion of Change award by the White House. In addition, she has been honored with the American Association for Cancer Research Centennial Medal for Distinguished Public Service and the Healthcare Businesswomen’s Association’s Woman of the Year Award.

Kathy serves on the advisory boards of Verily and Verily’s Project Baseline and is a member of the Harvard Business School (HBS) Health Advisory Board. She a Member of the FasterCures Non-Profit Council. Kathy previously served on President Obama’s 2015 Precision Medicine Initiative Working Group, the President’s Council of Advisors on Science and Technology (PCAST), National Cancer Advisory Board (NCAB), and the National Cancer Policy Board (NCBP).

Kathy has been featured on the Today Show, NBC Nightly News, CBS Evening News, Fox News, CNN, and Bloomberg. Her efforts have also been profiled by Fortune, The Wall Street Journal, Harvard Business Review, The New York Times, Forbes, The New Yorker, WIRED, and Fast Company.

Kathy received her MBA in general management from Harvard Business School and holds an honorary Doctorate from the University of Vermont.

 

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Donec ullamcorper nulla non metus auctor fringilla. Duis mollis, est non commodo luctus, nisi erat porttitor ligula, eget lacinia odio sem nec elit. Donec sed odio dui. Donec ullamcorper nulla non metus auctor fringilla. Etiam porta sem malesuada magna mollis euismod. Maecenas sed diam eget risus varius blandit sit amet non magna. Sed posuere consectetur est at lobortis.

Etiam porta sem malesuada magna mollis euismod. Sed posuere consectetur est at lobortis. Vivamus sagittis lacus vel augue laoreet rutrum faucibus dolor auctor. Duis mollis, est non commodo luctus, nisi erat porttitor ligula, eget lacinia odio sem nec elit. Morbi leo risus, porta ac consectetur ac, vestibulum at eros.

Nicole Sandilands

RN, BSN, OCN

Nicole has been a registered nurse for five years, specializing in oncology and palliative care. She began her career as an inpatient oncology nurse at Yale providing bedside care to patients and then transitioned to Norwalk Hospital where she worked as a chemotherapy infusion nurse. She received her nursing degree from Fairfield University and is currently pursuing her doctorate in nursing practice (DNP). Her research focus is on “Chemo Brain” which is studying the cognitive changes experienced from receiving chemotherapy.

 

Erin Mensching

RN, BSN, BA, OCN

Erin is a registered nurse and has been an oncology nurse for eight years at Norwalk Hospital. She has also served on the Patient Council Committee and is a member of the Oncology Nursing Society. Erin is a graduate of Fairfield University’s School of Nursing and earned her bachelor’s degree in psychology from the University of North Carolina at Chapel Hill. Prior to becoming an oncology nurse, Erin was a healthcare representative for Pfizer and Sanofi-Aventis.

 

Sarah Coulter

RN, OCN

Sarah has been a registered nurse for the past five years, specializing in Hematology Oncology and Bone Marrow Transplant. She has spent over ten years in the Oncology field and started her career at Yale New Haven Hospital. Over the last three years, Sarah worked as a traveling nurse in California, South Carolina, Florida, Texas and Maryland. She earned her nursing degree from St. Vincent’s School of Nursing. She is chemotherapy certified and is currently in school to obtain her master’s degree in nursing education.

 

William S. McKiernan

Former Chair and CEO
CyberSource Corporation

William McKiernan is the Chairman and Chief Executive Officer of CyberSource Corporation. Prior to founding CyberSource, Mr. McKiernan was President and Chief Operating Officer of McAfee Associates, now Network Associates; Mr. McKiernan held this position during the company’s initial public offering.

Before joining McAfee, Mr. McKiernan was Vice President of Princeton Venture Research, Inc. and held management positions at ROLM/IBM. In addition to serving on the Board of Directors of the MMRF, Mr. McKiernan is the West Coast Chairman of the Boston College Technology Council.

Mr. McKiernan holds a Bachelor of Science from Boston College and an MBA from Harvard Business School.

Gerald McDougall

Partner
PricewaterhouseCoopers LLP

Mr. McDougall is Partner at PricewaterhouseCoopers Health Sciences Practice, where he provides services to academic medical centers, bioscience companies, pharmaceutical companies, research universities, colleges, health systems, and other research organizations. His practice provides a broad range of research business and compliance services, including strategic and business planning, financial analysis, research compliance, clinical research operations improvement, and information systems implementation services.

In addition, his practice provides support services to the entire research continuum, from grant-funded basic science research, to translational research and clinical trials, including a dedicated group focusing on Clinical Research Consulting services.

Susan Marvin

Chair of the Board – The Marvin Companies

Susan Marvin, Chair of the Board of The Marvin Companies, was part of the third-generation management team in what is today a fourth-generation family owned and operated company.

Active in both profit and nonprofit boards, Susan serves on The Marvin Companies Board of Directors, M. A. Mortenson Company Board of Directors, the Multiple Myeloma Research Foundation (MMRF) Board of Directors, the National Association of Manufacturers Board of Directors, the University of Minnesota Foundation Board of Trustees and she is Chair of the Minnesota Chamber Foundation Board. She is a member of the Young Presidents’ Organization (YPO) Gold.

Prior to her current role, Susan was President of Marvin Windows and Doors where she oversaw the fenestration business.

Susan is a 1979 graduate of the University of Minnesota where she earned an undergraduate degree in Journalism.  A native of Warroad, Minnesota, Susan now lives in both Warroad and Minneapolis with her husband, Keith Schwartzwald.

Hugh Martin

Vice President of Strategy, Smart Communities
Verizon

Hugh Martin joined Verizon through the acquisition of Sensity Systems by Verizon in October 2016. Hugh created the vision for Sensity Systems and the Light Sensory Network and is responsible for steering the company’s strategic course. His 35-year track record as an entrepreneurial leader of cutting-edge technology companies, new ventures, and high-growth businesses includes serving at the helm of numerous highly successful organizations. In 2011, he was named CEO for Fortune magazine’s ‘Executive Dream Team: The startup edition,’ acknowledged for his ‘management chops’ and for successfully taking public two companies, in two different industries. Most recently, the World Economic Forum recognized Hugh and Sensity as a Technology Pioneer.

Prior to Sensity, Hugh was chairman and CEO of Pacific Biosciences, a leading company in third-generation DNA sequencing. He founded Pacific Biosciences in 2004 with a team from Cornell University and piloted the company through its IPO in 2010 and commercialization in 2011. Before that, he was chairman, president, and CEO of ONI Systems, a high-speed optical telecommunications systems company he founded in 1998 and took public in 2000. Named the Fastest Growing Company in Silicon Valley in 2001, ONI was sold to Ciena in 2002; Hugh then served as a consultant to Ciena.

During his career, Hugh also was president and director of 3DO, an interactive gaming company; served as a CEO-in-residence at the venture capital firm of Kleiner Perkins Caufield & Byers; and ran desktop engineering for Apple Computer. Earlier, he founded Ridge Computers, designer of the world’s first commercial reduced instruction set computing (RISC) minicomputer.

He earned a BS in electrical engineering from Rutgers, the State University of New Jersey-New Brunswick.

David L. Lucchino

Co-Founder, President and Chief Executive Officer
Frequency Therapeutics

David has played an integral role in launching, building and operating several successful companies in the life sciences. In 2014, he, along with Robert S. Langer at the Massachusetts Institute of Technology and other co-founders, started Frequency Therapeutics with the goal of developing regenerative medicines based on discoveries related to activating progenitor cells.

Before Frequency, David was President and Chief Executive Officer of Entrega Bio, a PureTech Health-founded biotechnology company focused on oral drug delivery technology. Prior to that, David co-founded, also with Dr. Langer, Semprus BioSciences. At Semprus, David oversaw the development of the company’s lead medical product, which focused on surface modifications designed to reduce infection and clotting, and which received FDA and European CE marketing clearance. Semprus was acquired in 2012 by Teleflex, Inc. Prior to Semprus, David worked at the investment firm Polaris Partners.

David currently serves as the Chairman of the Board of Directors of MassBio. He is a member of the College of Fellows of the American Institute for Medical and Biological Engineering and was appointed by Governor Charlie Baker to the Commonwealth’s Science, Technology, Engineering and Math Advisory Council. He also serves as a trustee of Mt. Auburn Hospital, a Harvard Medical School facility, a trustee of the Multiple Myeloma Research Foundation, and a member of the Board of Advisors of Life Science Cares.

David earned a B.A. from Denison University, an M.S. from the Newhouse School of Journalism at Syracuse University and an M.B.A. from the MIT Sloan School of Management as an Alfred P. Sloan Fellow.

Dana LaForge

Partner
Brera Capital Partners, LLC

Dana LaForge is a Partner at Brera Capital Partners, a private equity fund, and the Founder and Managing Partner of Colonnade Financial Group, a private equity services firm.

Prior to Brera and Colonnade, Dana was head of Financial Institutions Investment Banking and Chief of Staff of Banking and Capital Markets at Deutsche Bank and its predecessor companies. Earlier in his career, he was a bond trader and founded the Mortgage Finance Group.

Dana has served on numerous portfolio company boards and is the Chairman of GAB Robins NA. He was one of the earliest Directors of the Multiple Myeloma Research Foundation joining the Board in 1999 and helping guide the Foundation from start up through today serving as the organization’s only Chairman since being elected in 2003.

Dana earned a BS from Washington and Lee University and an MBA from Harvard Business School. He lives in New York City with his wife, Kathleen McCabe and their two daughters.

Rodney Gilmore

Corporate and Business Law, Real Estate Law
Doty Barlow Britt & Theiman LLP

Rodney Gilmore is an attorney in the California Bay Area and a longtime college football broadcaster.

Gilmore joined ESPN in August of 1996 as a college football analyst. He currently works on ESPN/ABC Saturday telecast with Mark Jones and Quint Kessenich and contributes to studio shows including College Football Live, Outside the Lines and SportsCenter. He previously served as an ESPN studio analyst and a contributor to ESPN.com and ESPN The Magazine.

Prior to joining ESPN, Gilmore worked as an analyst with Prime Sports Network in California (1993-95), covering Pac-10 football, along with SportsChannel Bay Area from 1991-93 and the Pacific Sports Network in 1990. He was nominated for an Emmy Award in 1994 for live sports coverage of Pac-10 football.

A 1982 Stanford University graduate with a degree in English, Gilmore was a defensive back under coaches Bill Walsh, Rod Dowhower and Paul Wiggin, and also played baseball for Stanford.

Following graduation from Stanford, he earned his law degree from the University of California at Berkeley (Boalt Hall) in 1986, and was admitted to the California State Bar the same year.  He began his law career in Los Angeles with the firm of Manatt Phelps & Phillips, LLP before returning to the Bay Area in 1988. He became a partner in the San Francisco business law firm Greene Radovsky Maloney & Share LLP in 1993. In 1997, he joined the Palo Alto, CA business law firm of Doty, Barlow, Britt & Thieman LLP. Rodney specializes in transactional law with an emphasis on business formation and planning, mergers and acquisitions, and commercial transactions. He also has extensive experience in commercial real estate matters, including sales and acquisitions, financings and leases.

Gilmore is a longtime volunteer for Stanford. He is a member and former officer of two entities sponsored by the Stanford Alumni Association. He previously served as chairman of the Stanford Athletic Board and as a member of the Board of Directors of the Stanford Alumni Association. He is also an active member of several Bar Associations and several local community organizations.

An Oakland, CA native, Gilmore is a member of the Oakland Babe Ruth Baseball Hall of Fame. He lives in the Bay Area with his wife, Marie, the former Mayor of Alameda, CA, and has two adult children (Anthony and Nicole).

Thomas Conheeney

Retired President
SAC Capital

Tom was appointed President of SAC Capital in July 2008. He joined SAC in October 1999 as Chief Operating Officer.

Prior to joining SAC, Tom was President of Investment Management Services, Inc (“IMS”) from 1996 to 1999. He joined Moore Capital /IMS in 1993 and served as its Director of Trading Operations and then Vice President until IMS split off from Moore in 1995. Tom joined Moore Capital /IMS from Goldman Sachs Trust Company, where he was a Vice President with responsibilities for daily operations, technology, and client services. From 1986 to 1993, Tom was in the operations and equity divisions of Goldman, Sachs & Co., becoming Vice President in 1991.

He retired from SAC December 2014.

Karen E. Andrews

Director
Jerome Lipper Multiple Myeloma Center, Dana-Farber Cancer Institute

Karen E. Andrews is currently SVP and General Counsel for the March of Dimes. Previously Karen was the General Counsel and Corporate Secretary of BBDO Worldwide, Inc. where she was responsible for the management of the legal activities of over 150 individual operating units throughout the world.

Prior to joining BBDO Worldwide, Ms. Andrews was Associate General Counsel and Director of Television Business Affairs at Time Inc. Ms. Andrews began her career in law as a Litigation Associate at the New York law firm of Weil, Gotshal & Manges where she specialized in Entertainment Litigation.

Ms. Andrews graduated cum laude from the University of Vermont with a Bachelor of Science degree in biology and earned her law degree, cum laude, from Temple School of Law.

Ms. Andrews is a member of the American Bar Association and the New York State Bar Association.

In 1998, Ms. Andrews co-founded the Multiple Myeloma Research Foundation with Kathy Giusti.

Kenneth Anderson, MD

Director
Jerome Lipper Multiple Myeloma Center, Dana-Farber Cancer Institute

Dr. Anderson graduated from Johns Hopkins Medical School. He trained in internal medicine at Johns Hopkins Hospital and completed hematology, medical oncology, and tumor immunology training at the Dana-Farber Cancer Institute.

Dr. Anderson is the Kraft Family Professor of Medicine at Harvard Medical School and serves as Chief of the Division of Hematologic Neoplasia, Director of the Jerome Lipper Multiple Myeloma Center, and Vice Chair of the Joint Program in Transfusion Medicine at the Dana-Farber Cancer Institute.

He received the Waldenstrom’s Award in 2003 for his translational research directed to the development of novel therapeutics targeting the myeloma cell in its microenvironment and is a Doris Duke Distinguished Clinical Research Scientist.

In addition to serving on the Board of Directors of the MMRF, Dr. Anderson serves as Chairman of the MMRF’s Scientific Advisory Committee, Chairman of the Multiple Myeloma Research Consortium, and Chairman of the National Comprehensive Cancer Network’s Multiple Myeloma Clinical Practice Guidelines Committee.

Lori Tauber Marcus

Founder
Courtyard Connections

Vice Chairman of the Board
MMRF

Lori Marcus is an independent board director and keynote speaker. She is currently serving in the role of Vice Chairman of the MMRF board. Lori is also the Chairman of the board of DNA Diagnostics Center, a growing leader in private DNA testing services, where she guides overall strategy and governance for corporate growth. Additionally, she is an independent Board Director for SHARE, a 40-year-old survivor-led organization based in New York City that provides support, information, and resources to women affected by breast and ovarian cancers. Lori also currently serves on the CMO advisory board for VentureBeat and is a board advisor to Carrington Farms.

Most recently, Ms. Marcus served as Interim Global Chief Marketing Officer for Peloton Interactive, Inc., a private equity and venture capital backed home fitness innovator. At Peloton, Lori drove business growth with strategy, brand marketing, communications, PR, social/digital media, consumer insights, data analytics, creative services, and community engagement. Prior, Lori was Chief Global Brand and Product Officer at Keurig Green Mountain. With more than 30 years of broad-based marketing and general management experience, Lori was responsible for global brand and product management for the Keurig system of innovative brewers and beverages. During her tenure at Keurig Green Mountain, she also led the company’s global marketing efforts and all aspects of e-commerce, digital/social media, marketing insights, and graphic design. Lori was also Chief Marketing Officer of The Children’s Place Retail Stores and SVP Marketing at PepsiCo.

Lori is a graduate of the Wharton School, University of Pennsylvania.

Mike Mortimer

Executive Partner and Founder
GHO Capital

Chairman of the Board
MMRF

Mike has 28 years of operating and management experience, most recently at Quintiles as an Executive Vice President. In this role, Mike was responsible for Quintiles’ global operations in Health Engagement and Communications, Legal and Risk Management, Real Estate and Facilities, Human Resources as well as Security. He was also the Chairman of the company’s European, Middle East, Africa and Latin American management board, in which he was accountable for the organic and inorganic growth strategies of the regions.

Mike joined Quintiles in July of 2003 following 10 years at Charles Schwab Corp., where he was Senior Vice President of Human Resources for the company’s global retail and internet organizations.

Mike sits on the boards of Oxford Cancer Biomarkers Ltd., HUYA Bioscience International and the Multiple Myeloma Research Foundation.

He holds a bachelor’s degree in Behavioral Sciences from The Ohio State University.

Paul Giusti

President and Chief Executive Officer
MMRF and MMRC

Paul Giusti is the President and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF). Prior to the MMRF, Mr. Giusti worked as a Chief Executive Officer, leader, executive and entrepreneur for over 30 years; he has founded, managed and led a variety of businesses. Early in his career, Mr. Giusti worked as an executive for GE where he held a number of management positions with a wide range of responsibilities.

Mr. Giusti has worked closely with the MMRF since its founding in 1998. In addition to chairing the successful $100 million capital campaign, he has served as a consultant for a number of foundation projects, led several MMRF outreach efforts and spoken on behalf of the MMRF.

Mr. Giusti holds a Bachelor of Science degree from the Colorado School of Mines and an MBA from Harvard University.

Kathy Giusti

Founder and Chief Mission Officer
MMRF and MMRC

Faculty Co-Chair, HBS Kraft Precision Medicine Accelerator
Harvard Business School

Kathy Giusti, a multiple myeloma patient, is the Founder of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). She is also the Chief Mission Officer of the MMRF. Kathy is the Henry & Allison McCance Family Senior Fellow at Harvard Business School, where she serves as Faculty Co-Chair of the HBS Kraft Precision Medicine Accelerator. Kathy has more than two decades of experience in the pharmaceutical industry, previously holding senior positions at G.D. Searle and Merck.

Since founding the MMRF in 1998, Kathy has become a widely respected leader in establishing innovative, collaborative research models in the areas of tissue banking, genomics, and clinical trials. These models are dramatically accelerating the pace at which lifesaving treatments are brought to patients and are building an end-to-end solution in precision medicine. Today, she is recognized as a pioneer of precision medicine, a champion of data sharing, and a strong advocate for patient engagement.

In 2016, Kathy was named Faculty Co-Chair of the Harvard Business School (HBS) Kraft Precision Medicine Accelerator, a $20 million program endowed by Robert Kraft and the Kraft Family Foundation. Under her leadership, the HBS Kraft Precision Medicine Accelerator convenes best-in-class leaders from science, business, and technology to identify and solve challenges slowing the advancement of precision medicine. The HBS Kraft PM Accelerator disseminates best practices and models to overcome these challenges, and ultimately enables faster adoption of high-impact innovations.

Kathy has earned numerous prestigious awards and recognitions, including being named 1 of 3 Top Business Leaders Disrupting Medicine by Fortune Magazine and #19 on Fortune’s World’s 50 Greatest Leaders list. She was also named one of the world’s 100 Most Influential People by TIME magazine. Kathy received the Open Science Champion of Change award by the White House. In addition, she has been honored with the American Association for Cancer Research Centennial Medal for Distinguished Public Service and the Healthcare Businesswomen’s Association’s Woman of the Year Award.

Kathy serves on the advisory boards of Verily and Verily’s Project Baseline and is a member of the Harvard Business School (HBS) Health Advisory Board. She a Member of the FasterCures Non-Profit Council. Kathy previously served on President Obama’s 2015 Precision Medicine Initiative Working Group, the President’s Council of Advisors on Science and Technology (PCAST), National Cancer Advisory Board (NCAB), and the National Cancer Policy Board (NCBP).

Kathy has been featured on the Today Show, NBC Nightly News, CBS Evening News, Fox News, CNN, and Bloomberg. Her efforts have also been profiled by Fortune, The Wall Street Journal, Harvard Business Review, The New York Times, Forbes, The New Yorker, WIRED, and Fast Company.

Kathy received her MBA in general management from Harvard Business School and holds an honorary Doctorate from the University of Vermont.

Learn more about Kathy.

Laugh for Life:
New York

POSTPONED

Ziegfield Ballroom

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Etiam porta sem malesuada magna mollis euismod. Sed posuere consectetur est at lobortis. Vivamus sagittis lacus vel augue laoreet rutrum faucibus dolor auctor. Duis mollis, est non commodo luctus, nisi erat porttitor ligula, eget lacinia odio sem nec elit. Morbi leo risus, porta ac consectetur ac, vestibulum at eros.