Coronavirus (COVID-19) & Multiple Myeloma

Coronavirus (COVID-19) & Multiple Myeloma

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COVID-19
+ Additional COVID-19 videos
Dr. Cho's 'COVID-19 & Multiple Myeloma' Video Series: MMRF & Levine Cancer Institute COVID-19 Q&A Video Series:
 

Our Chief Medical Officer, Hearn Cho, addresses important questions for multiple myeloma patients

Coronavirus

While Coronavirus (COVID-19) continues to dominate news broadcasts around the world, as the MMRF’s Chief Medical Officer, I believe communicating directly with our patients at this time is crucial to keeping you informed and helping ease any stress you may be feeling about this health issue.

The MMRF highly recommends that patients with multiple myeloma exercise best hygiene practices and take the necessary precautions to avoid exposure to COVID-19. Please see our COVID-19 FAQ for Multiple Myeloma Patients, below.

 

How to minimize your risk

  • Ensure you have enough food and medicine, both prescription and over-the-counter, for about two weeks. If possible have a family member or other caregiver shop for you. Contact your myeloma physician about obtaining extra necessary medications.
  • Wash your hands with soap and water frequently for at least 20 seconds each time.
  • If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
  • Avoid touching your nose, eyes, and mouth with your hands.
  • Avoid friends, family, and colleagues who appear to be sick.
  • Practice social distancing; the Centers for Disease Control and Prevention (CDC) recommend staying at least 6 feet from others while out in public.
  • Limit social gatherings; try to avoid any meeting of 10 or more people.
  • Wear masks when in crowded areas with poor air circulation.
  • Avoid any non-essential travel, especially by commercial airline or cruise ship.
  • Avoid travel to any areas where outbreaks are occurring. Check the latest CDC travel info here.
  • Check the latest announcements from the WHO here, and the CDC here.
  • As always, maintain hydration and exercise periodically; this reduces the risk of blood clots.
  • If you develop a fever, seek medical attention, preferably from your myeloma doctor.
  • If you are coughing or sneezing, contain the spread of germs by coughing/sneezing into the crook of your elbow or a tissue instead of your hand. Dispose of the tissue promptly.
  • Because it is still flu season, please strongly consider getting a flu shot.
  • If you have a higher risk of Severe Illness, consult additional information here.
  • If you are sick, check the CDC guide on caring for yourself at home here.
 

F.A.Q.

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Information on COVID-19 Vaccines

+ Which vaccines have been approved/are near approval?
The vaccine made by Pfizer received an Emergency Use Authorization (EUA) from the USFDA on Dec 11 2020 and is currently being distributed in the US. Vaccines from Moderna and AstraZeneca could receive EUA in December 2020 or early in 2021.
+ Are these vaccines safe for myeloma patients?
The Pfizer and Moderna vaccines are fully synthetic RNA vaccines. The AstraZeneca vaccine is a non-infectious viral particle. All are safe for myeloma patients; none are live viruses.
+ Are these vaccines effective?
In large Phase 3 clinical trials, the Pfizer and Moderna vaccines were shown to be safe and effective in preventing COVID-19 infection.
+ Should all myeloma patients receive a vaccine?
We recommend that all myeloma patients receive a vaccine when it becomes available to them.
+ When can myeloma patients receive a vaccine?
The CDC has recommended that the first vaccinations should be offered to front-line health care workers and residents of long-term care facilities. States will determine the priority for vaccination.
+ What are the side effects of receiving the vaccine?
Risk of side effects is similar to that seen with other vaccinations, typically low grade, flu-like symptoms.
+ Do I need to be off treatment or to change/delay my treatment in order to receive the vaccine?
Discuss with your doctor timing and any adjustment in treatments in relation to vaccination.
+ If I am on treatment or otherwise immunocompromised, should I stay away from a member of my household after they have received the vaccine?
The vaccine is not live, so there is no need to avoid anyone who has been vaccinated.
+ What are the recommendations for family members in same household or caregivers?
We recommend that everyone receive the vaccine once it becomes available to them; the process of vaccinating everyone will take several months. We know that the vaccine prevents infection with COVID. But it is still unclear if the vaccine will prevent the spread of virus from someone who has been vaccinated but may still be carrying the virus. Those who have been vaccinated should continue to wear a mask for the time being to prevent infecting others with COVID they may be carrying.
+ Have any studies had been done in the MM patient population using the vaccine?
There have not yet been specific studies done in the myeloma patient population using the vaccine.
+ If I get vaccinated, can I stop wearing a mask?
No. Although effective vaccination will protect you, it is not known if it will prevent you from spreading the virus to other people. We strongly recommend wearing a mask in public spaces, social distancing, and maintaining good hygiene practices even after you receive the vaccine. These recommendations will change as more people are vaccinated and virus infection rates decrease.

COVID Testing, Immunity, and Vaccination

Prueba de COVID, inmunidad y vacunación

+ What COVID-19 tests are the most reliable?
So far, the nasopharyngeal PCR test has been the gold standard for COVID-19 testing. This test, which uses a sample taken from a swab inserted through the nose toward the back of the throat, has a sensitivity of up to 95% in people who have symptoms. That is to say, the PCR test has the ability to correctly identify individuals who are positive for the virus that causes COVID-19 (SARS-CoV-2, often referred to as “novel coronavirus”). Just as important, unlike other tests, this test is not prone to the problem of showing that an uninfected person has COVID-19 (false positive). The test can, however, mistakenly show that an infected person does NOT have COVID-19 (false negative). Factors that can lead to a false negative are the stage of the infection and the technique used by the person obtaining the sample. PCR tests using samples collected in other ways (from the nostril or saliva) have shown encouraging results in people who are showing symptoms.
Anterior nasal swabs based on PCR methods also perform well in symptomatic individuals. More recently PCR based saliva testing has shown to have high sensitivity in symptomatic people. The other main type of COVID-19 test uses what are called antigen-based methods to determine whether a person is infected. This test also uses samples taken from the nose or saliva, but it does not need to be administered by a doctor, nurse, or medical technician; it can be performed at home. The tradeoff for this convenience is that antigen-based tests are not as sensitive as the PCR tests.
+ How long are you immune to coronavirus if you were previously infected?
There are still questions about how long immunity lasts—and how strong the immunity is—in a person who has been infected with and recovered from the virus that causes COVID-19 (SARS-CoV-2). We know that the levels of antibodies that are formed after coronavirus infection decrease after 3-4 months. There have been documented cases of people who have been re-infected.
+ Why is it important to wear a mask?
Wearing a mask prevents the spread of the respiratory droplets that can transmit the coronavirus that causes COVID-19 from one person to another. For this simple reason, mask-wearing is a helpful—and essential—strategy for protecting ourselves (and each other) from this infection.
+ What is the status of the COVID-19 vaccines in development? Is convalescent plasma a useful treatment?
Several vaccines are in phase 3 clinical trials, the last hurdle any drug must clear before being made available for general use. Research into a COVID-19 vaccine has progressed at a speed never before accomplished in drug research, but realistically the soonest a safe, effective vaccine may be available for public is early- to mid-2021.
Studies into the use of convalescent plasma—that is, taking plasma from people who have recovered from COVID-19 and administering it to people who are infected—have shown some benefit in certain patients, but the studies had some limitations and the results are still being reviewed. There is not yet any specific information available about the role of convalescent plasma treatment in myeloma patients.
+ How can myeloma patients know when it is safe to once again leave their homes?
The coronavirus that causes COVID-19 continues to be present, at different levels in different areas, throughout the United States. Likewise, the rate of spread of the virus is variable across different regions and continues to change.
It is recommended that myeloma patients continue to practice caution (face coverings, good hand hygiene, and social distancing), especially with the arrival of fall, as some experts believe we could see a second wave of COVID-19 infections.
Staying aware of local COVID-19 trends—by checking the latest announcements from the WHO (here), and the CDC (here) —can help guide decisions on whether it is reasonably safe to take part in activities outside of the home.
+ ¿Qué pruebas para COVID-19 son las más confiables?
Hasta ahora, la prueba de PCR nasofaríngea ha sido el estándar de oro para las pruebas de COVID-19. Esta prueba, que utiliza una muestra tomada con un hisopo que se inserta a través de la nariz hacia la parte posterior de la garganta, tiene una sensibilidad de hasta el 95% en personas que tienen síntomas. Es decir, la prueba de PCR tiene la capacidad de identificar correctamente a las personas que son positivas al virus que causa el COVID-19 (SARS-CoV-2, a menudo denominado “nuevo coronavirus”). Igual de importante, a diferencia de otras pruebas, esta prueba no es propensa al problema de mostrar que una persona no infectada tiene COVID-19 (falso positivo). Sin embargo, la prueba puede mostrar erróneamente que una persona infectada NO tiene COVID-19 (falso negativo). Los factores que pueden dar lugar a un falso negativo son el estadio de la infección y la técnica utilizada por la persona que obtiene la muestra. Las pruebas de PCR que utilizan muestras obtenidas de otras formas (de la fosa nasal o de la saliva) han mostrado resultados alentadores en personas que presentan síntomas.
Los hisopos nasales anteriores basados ​​en métodos de PCR también funcionan bien en individuos sintomáticos. Más recientemente, las pruebas de saliva basadas en PCR han demostrado tener una alta sensibilidad en personas sintomáticas. El otro tipo principal de prueba de COVID-19 utiliza los llamados métodos basados ​​en antígenos para determinar si una persona está infectada. Esta prueba también usa muestras tomadas de la nariz o de la saliva, pero no es necesario que la administre un médico, enfermera o técnico médico; se puede realizar en casa. La desventaja de esta conveniencia es que las pruebas basadas en antígenos no son tan sensibles como las pruebas de PCR.
+ ¿Cuánto tiempo es inmune al coronavirus si estuvo infectado anteriormente?
Todavía hay incertidumbre sobre cuánto tiempo dura la inmunidad y qué tan fuerte es la inmunidad en una persona que ha sido infectada y se ha recuperado del virus que causa COVID-19 (SARS-CoV-2). Sabemos que los anticuerpos que se forman después de la infección por coronavirus disminuyen después de 3-4 meses. Se han documentado casos de personas que se han reinfectado.
+ ¿Por qué es importante usar cubrebocas?
El uso de cubrebocas evita la propagación de las gotitas respiratorias que pueden transmitir el coronavirus que causa el COVID-19 de una persona a otra. Por esta sencilla razón, el uso de cubrebocas es una estrategia útil y esencial para protegernos a nosotros mismos (y a los demás) de esta infección.
+ ¿Cuál es el estado de las vacunas COVID-19 en desarrollo? ¿Es útil el tratamiento con plasma de convalecencia?
Varias vacunas se encuentran en ensayos clínicos de fase 3, el último obstáculo que debe superar cualquier medicamento antes de estar disponible para uso general. La investigación de una vacuna COVID-19 ha progresado a una velocidad nunca antes lograda en la investigación de medicamentos, aún así, lo más pronto que una vacuna segura y efectiva puede estar disponible para el público es desde principios hasta mediados de 2021.
Los estudios sobre el uso de plasma de convalecencia, es decir, tomar plasma de personas que se han recuperado de COVID-19 y administrarlo a personas infectadas, han mostrado algún beneficio en ciertos pacientes, pero los estudios tenían algunas limitaciones y los resultados aún se están revisando. Todavía no hay información específica disponible sobre el papel del tratamiento con plasma de convalecencia en pacientes con mieloma.
+ ¿Cómo pueden saber los pacientes con mieloma cuándo es seguro volver a salir de casa?
El coronavirus causante del COVID-19 sigue presente, a diferentes niveles en distintas zonas, en todo Estados Unidos. Asimismo, la tasa de propagación del virus es variable en las diferentes regiones y continúa cambiando.
Se recomienda que los pacientes con mieloma continúen teniendo precaución (cubrirse el rostro, buena higiene de manos y distanciamiento social), especialmente con la llegada del otoño, un momento en el que los expertos creen que podría verse una segunda ola de infecciones por COVID-19.
Mantenerse al tanto de las tendencias locales de COVID-19, al revisar los últimos anuncios de la OMS (aquí) y la CDC (aquí), puede ayudar a orientar las decisiones sobre si es razonablemente seguro participar en actividades fuera del hogar.

COVID Prevention and MM

Prevención de COVID y Mieloma

+ What information is there on the effects of COVID-19 on myeloma patients?
Patients with multiple myeloma are at a higher risk of getting sicker than the general population if they contract COVID-19—this includes a higher risk of being hospitalized and a higher risk of dying from this infection.
+ ¿Qué información hay sobre los efectos del COVID-19 en los pacientes con mieloma?
Los pacientes con mieloma múltiple tienen un mayor riesgo de enfermarse más que la población general si contraen COVID-19; esto incluye un mayor riesgo de ser hospitalizados y un mayor riesgo de morir a causa de esta infección.

Multiple Myeloma Transplant and Cellular Therapy:

Trasplante de mieloma múltiple y terapia celular:

+ Do I still need to wait to have a stem cell transplant or is it safe to have the procedure?
Most transplant centers have returned to normal operations, having implemented intensive COVID-19–specific guidelines and procedures to ensure patient safety. However, because there are differences in the spread of this virus in different parts of the country, it would be best to ask your local transplant center about its policies.
+ If I’ve had a stem cell transplant, can I be vaccinated with the usual vaccines and even a COVID-19 vaccine when it becomes available?
You can safely proceed with receiving the usual post-transplant vaccines. Whether you can safely receive a COVID-19 vaccine, when one (or more) is available, will depend on details specific to the vaccine—for example, what it contains and how it was produced.
+ I had an autologous stem cell transplant within the last year. Do I need to do anything in addition to current treatment?
No. You should be on prophylactic anti-viral medication to prevent shingles. You should also adhere to the booster vaccination schedule starting at one year after auto transplant. No additional medications are recommended at this time specific to COVID-19.
+ I am scheduled for a stem cell harvest and/or autologous stem cell transplant (auto-transplant). Will the COVID-19 outbreak affect this?
The American Society for Transplantation and Cellular Therapy (ASTCT), the leading medical organization on transplant, has issued interim guidelines for COVID-19 management in transplant, and two of the leading US transplant centers, the Mayo Clinic in Rochester, Minnesota and The Fred Hutchinson Comprehensive Cancer Center in Seattle, Washington, have issued recommendations that they are instituting at their sites. These are slightly different, but overall they provide useful guidance in this matter.
If you are in remission and the stem cell harvest and transplant were schedule for consolidation therapy, we recommend you have a discussion with your doctor about delaying both until the immediate crisis has passed. If you have already begun the stem cell mobilization process (chemotherapy and/or growth factors), you should discuss with your doctor whether to proceed with the harvest or not; you should still discuss delaying the transplant procedure even if you get your stem cells harvested. Your doctor may recommend going back on outpatient chemotherapy while you wait for the right opportunity to proceed with harvest/transplant.
If your doctor recommended auto-transplant for the treatment of relapsed disease, you should have a discussion with her/him as to whether you should proceed or not. There may be alternative therapies available, but if your doctor feels that auto-transplant is the best option, you should weigh the risks and benefits of proceeding at this time versus delaying.
We encourage you to have these discussions with your myeloma treatment team as soon as possible. They know you best, and they may have decided on their own guidelines for managing transplant during this crisis.
+ I am/was on a clinical trial for CAR-T cell therapy within the last two years. Do I need to do anything in addition to current treatment?
Most CAR-T cell trials include a medicine called fludarabine as part of the conditioning chemotherapy. This medicine has a very strong suppressive effect on T cells lasting up to two years. We recommend you speak with your doctor about using intravenous immunoglobulin (IVIg, Gammunex) on a monthly basis to support your immune system and taking anti-biotics to prevent a type of pneumonia caused by an organism called Pneumocystis jirovecii (formerly known as Pneumocystis carinii).
+ ¿Debo esperar todavía para someterme a un trasplante de células madre o es seguro realizarme el procedimiento?
La mayoría de los centros de trasplantes han vuelto a sus operaciones normales, habiendo implementado pautas y procedimientos intensivos específicos de COVID-19 para garantizar la seguridad del paciente. Sin embargo, debido a que existen diferencias en la propagación de este virus en diferentes partes del país, sería mejor preguntarle a su centro de trasplantes local sobre sus estrategias.
+ Si he tenido un trasplante de células madre, ¿puedo vacunarme con las vacunas habituales e incluso con la vacuna COVID-19 cuando esté disponible?
Puede proceder con seguridad a recibir las vacunas habituales posteriores al trasplante. El poder recibir una vacuna COVID-19 de manera segura, cuando haya una (o más) disponible, dependerá de los detalles específicos de la vacuna, por ejemplo, qué contiene y cómo se produjo.
+ Tuve un autotrasplante de células madre en el último año. ¿Necesito hacer algo además del tratamiento actual?
No. Debe tomar medicación antiviral profiláctica para prevenir el herpes zóster. También debe cumplir con el calendario de vacunación a partir de un año después del autotrasplante. No se recomiendan medicamentos adicionales en este momento específicos para COVID-19.
+ Estoy programado para una cosecha de células madre y/o un autotrasplante de células madre (autotrasplante). ¿Afectará esto la pandemia de COVID-19?
La Sociedad Estadounidense de Trasplantes y Terapia Celular (ASTCT), la organización médica líder en trasplantes, ha emitido pautas provisionales para el manejo de COVID-19 en trasplantes, y dos de los principales centros de trasplantes de EE. UU., Mayo Clinic en Rochester, Minnesota y La Fred Hutchinson Comprehensive Cancer Center en Seattle, Washington, han emitido recomendaciones que están implementando en sus centros. Son un poco diferentes, pero en general proporcionan una guía útil en este asunto.
Si está en remisión y la recolección y el trasplante de células madre estaban programados para la terapia de consolidación, le recomendamos que hable con su médico acerca de retrasar ambos hasta que haya pasado la crisis inmediata. Si ya ha comenzado el proceso de movilización de células madre (quimioterapia y / o factores de crecimiento), debe discutir con su médico si debe continuar con la cosecha o no; aún debe discutir la posibilidad de retrasar el procedimiento de trasplante incluso si obtiene sus células madre recolectadas. Es posible que su médico le recomiende volver a la quimioterapia ambulatoria mientras espera la oportunidad adecuada para proceder con la cosecha / trasplante.
Si su médico le recomendó un autotrasplante para el tratamiento de la enfermedad recidivante, debe conversar con ella/ o él sobre si debe proceder o no. Es posible que haya terapias alternativas disponibles, pero si su médico considera que el autotrasplante es la mejor opción, debe considerar los riesgos y beneficios de continuar en este momento frente a retrasarlo.
Le recomendamos que tenga estas conversaciones con su equipo de tratamiento del mieloma lo antes posible. Ellos lo conocen mejor que nadie y es posible que hayan decidido sus propias pautas para manejar el trasplante durante esta crisis.
+ Estoy o estuve en un ensayo clínico para la terapia con células CAR-T en los últimos dos años. ¿Necesito hacer algo además del tratamiento actual?
La mayoría de los ensayos de células CAR-T incluyen un medicamento llamado fludarabina como parte de la quimioterapia de acondicionamiento. Este medicamento tiene un efecto supresor muy fuerte sobre las células T que dura hasta dos años. Le recomendamos que hable con su médico sobre el uso mensual de inmunoglobulina intravenosa (IgIV, Gammunex) para apoyar su sistema inmunológico y que tome antibióticos para prevenir un tipo de neumonía causada por un organismo llamado Pneumocystis jirovecii (anteriormente conocido como Pneumocystis carinii).

Multiple Myeloma and the Immune System:

Mieloma múltiple y el sistema inmunológico:

+ I have smoldering multiple myeloma. Should I take any special precautions?
It is not known if people with smoldering myeloma have completely normal immunity or if it is impaired as in active myeloma. It is likely that the majority of smoldering myeloma patients are somewhere between the two extremes. We strongly recommend every individual follow social distancing and good hygiene practices. At this time, there are no specific additional recommendations. If you do develop any of the common symptoms of COVID-19 infection, including fever, cough, body aches, fatigue, and shortness of breath, you should call your doctor right away.
If you are participating in a clinical trial for smoldering myeloma, you should speak with your doctor for instructions on continuing, delaying, or stopping therapy.
+ My white blood cell/neutrophil count is low. Do I need to do anything in addition to current treatment?
We recommend you discuss with your doctor using growth factors (Neupogen, Neulasta) to support your white blood cell count and using intravenous immunoglobulin (IVIg, Gammunex) on a monthly basis to support your immune system. Your doctor may also recommend taking anti-biotics and anti-fungal medication until your white blood cell count increases
+ My normal immunoglobulin/ antibody levels are low. Do I need to do anything in addition to current treatment?
We recommend you discuss with your doctor using intravenous immunoglobulin (IVIg, Gammunex) on a monthly basis to support your immune system. Your doctor may also recommend taking anti-biotics and anti-fungal medication until immunoglobulin/antibody levels return to normal.
+ I am getting IVIg every month to help guard against infections. I heard that this can make COVID-19 infection worse. Is that true?
At this time, there is no credible evidence that IVIg has any impact, positive or negative, on COVID-19 infection. You should speak with your myeloma treatment team to decide if you should continue or delay IVIg treatment until the immediate crisis has passed.
+ Tengo mieloma múltiple quiescente. ¿Debo tomar precauciones especiales?
No se sabe si las personas con mieloma quiescente tienen una inmunidad completamente normal o si está alterada como en el mieloma activo. Es probable que la mayoría de los pacientes con mieloma quiescente se encuentren entre los dos extremos. Se les recomienda mucho a todas las personas que sigan el distanciamiento social y las buenas prácticas de higiene. En este momento, no hay recomendaciones adicionales específicas. Si desarrolla alguno de los síntomas comunes de la infección de COVID-19, como fiebre, tos, dolores corporales, fatiga y dificultad para respirar, debe llamar a su médico de inmediato.
Si está participando en un ensayo clínico para el mieloma quiescente, debe hablar con su médico para obtener instrucciones sobre cómo continuar, retrasar o suspender la terapia.
+ Mi recuento de glóbulos blancos / neutrófilos es bajo. ¿Necesito hacer algo además del tratamiento actual?
Le recomendamos que hable con su médico sobre el uso de factores de crecimiento (Neupogen, Neulasta) para respaldar su recuento de glóbulos blancos y el uso de inmunoglobulina intravenosa (IgIV, Gammunex) mensualmente para respaldar su sistema inmunológico. Su médico también puede recomendar tomar antibióticos y medicamentos antifúngicos hasta que aumente el recuento de glóbulos blancos.
+ Mis niveles normales de inmunoglobulina / anticuerpos son bajos. ¿Necesito hacer algo además del tratamiento actual?
Le recomendamos que hable con su médico sobre el uso de inmunoglobulina intravenosa (IgIV, Gammunex) mensualmente para apoyar su sistema inmunológico. Su médico también puede recomendar tomar antibióticos y medicamentos antifúngicos hasta que los niveles de inmunoglobulina / anticuerpos vuelvan a la normalidad.
+ Recibo inmunoglobulina intravenosa todos los meses para ayudar a protegerme contra las infecciones. Escuché que esto puede empeorar la infección por COVID-19. ¿Es eso cierto?
En este momento, no hay evidencia creíble de que la inmunoglobulina intravenosa tenga algún impacto, positivo o negativo, en la infección por COVID-19. Debe hablar con su equipo de tratamiento del mieloma para decidir si debe continuar o retrasar el tratamiento con inmunoglobulina intravenosa hasta que haya pasado la crisis inmediata.

Medications and COVID-19:

Medicamentos y COVID-19:

+ What role do steroids play in COVID-19 treatment and why is dexamethasone (a steroid) contraindicated for myeloma patients during the pandemic?
Long-term or chronic use of dexamethasone lowers the immune system’s ability to fight infections; this is why your myeloma doctor may lower or discontinue dexamethasone. In patients who are hospitalized for COVID-19, low doses of dexamethasone have been shown to help—allowing them to recover faster, though this was seen only in very ill hospitalized patients who were mechanically ventilated or who required supplemental oxygen. Dexamethasone does not prevent COVID-19.
+ I heard there are several medications in clinical trials to treat COVID-19. Should I get a prescription for these and take them or store them at home in case I have signs of infection?
At this time, clinical trials for anti-viral drugs such as remdesivir and anti-malarial drugs chloroquine and hydroxychloroquine are underway to determine if these are effective against COVID-19. Remdesivir is an experimental drug (not approved by the FDA) originally developed for the Ebola virus and it is not commercially available. Chloroquine and hydroxychloroquine have potential for serious side effects, especially on the heart, and should not be taken without a doctor’s prescription and supervision. The HIV drug Kaletra was tested in a clinical trial in China and was found to have no effect on severe COVID-19 infection. Finally, there are plans for clinical testing of the blood pressure drug losartan based on its potential effect on the way the virus enters and infects cells. However, there is no scientific evidence that any of these medications can prevent COVID-19 infection or can be used to treat the infection at home, so you should not take any of them without consulting your myeloma treatment team. It is likely they will advise you against taking them.
+ Should I keep anti-biotics at home to take in case of a fever?
We do not recommend stockpiling or traveling with anti-biotics. Anti-biotics treat bacterial infections; they will have no effect on a virus such as COVID-19. In addition, taking anti-biotics without a doctor’s supervision encourages the development of anti-biotic resistant bacteria. If you develop an infection and fever, you should seek medical attention rather than treat yourself at home without a doctor’s guidance.
+ I heard that I shouldn’t take non-steroidal anti-inflammatory drugs (NSAIDs) in case of COVID-19 infection.
This does not apply to myeloma patients because you should not take NSAIDs anyway because of increased risk for kidney failure. This class includes ibuprofen (Motrin), naproxen (Aleve) and other over-the-counter medications. You have probably already been instructed to take acetaminophen (Tylenol) for fever or pain, and narcotic medications for moderate-severe pain. The COVID-19 crisis does not change this recommendation; DO NOT TAKE NSAIDs..
+ I am prescribed steroids as part of my myeloma treatment plan and I heard I shouldn’t take them. Is that true?
You should speak with your doctor about continuing or stopping steroids such as dexamethasone or prednisone. The World Health Organization (WHO) issued guidelines recommending against steroids for the treatment of severe COVID-19 infection with respiratory distress, but that recommendation was based on findings in a related disease and only applies to patients who are hospitalized for severe illness. Other regulatory agencies such as the FDA and CDC have not issued such recommendations. Steroids are an important part of most myeloma treatments, so you should have a discussion with your myeloma treatment team about the risks and benefits of continuing them.
+ I take acyclovir or valcyclovir for shingles prophylaxis. Will this help prevent COVID-19 infection?
No. There is no evidence that acyclovir or valcyclovir have any effect on COVID-19. You should still follow social distancing and good hygiene guidelines.
+ Do I need to take any additional medications during cold/flu season?
Many of the approved medications for multiple myeloma require prophylactic medications to guard against infections. For proteasome inhibitors (Velcade, Kyprolis, Ninlaro) we recommend anti-viral medication to prevent shingles. For anti-CD38 agents (Darzalex, Sarclisa) we recommend anti-viral medication to prevent shingles and testing for exposure to Hepatitis B virus. If you are positive, we strongly recommend medication to prevent reactivation of Hepatitis B virus. For long-term exposure to high dose steroids (>120 mg of dexamethasone/week or equivalent for more than one month) you should discuss with your doctor taking anti-biotics to prevent a type of pneumonia caused by an organism called Pneumocystis jirovecii (formerly known as Pneumocystis carinii). No additional medications are recommended at this time specific to COVID-19.
+ ¿Qué papel juegan los esteroides en el tratamiento de COVID-19 y por qué la dexametasona (un esteroide) está contraindicada para los pacientes con mieloma durante la pandemia?
El uso prolongado o crónico de dexametasona reduce la capacidad del sistema inmunológico para combatir infecciones; esta es la razón por la que su médico especializado en mieloma puede reducir o suspender la dexametasona. En los pacientes hospitalizados por COVID-19, se ha demostrado que las dosis bajas de dexametasona ayudan, lo que les permite recuperarse más rápido, aunque solo se observó en pacientes hospitalizados que recibieron ventilación mecánica o que requirieron oxígeno suplementario. La dexametasona no previene el COVID-19.
+ Escuché que hay varios medicamentos en ensayos clínicos para tratar COVID-19. ¿Debería obtener una receta para estos y tomarlos o guardarlos en casa en caso de que tenga signos de infección?
En este momento, se están llevando a cabo ensayos clínicos de medicamentos antivirales como el remdesivir y los medicamentos contra la malaria cloroquina e hidroxicloroquina para determinar si estos son efectivos contra COVID-19. Remdesivir es un fármaco experimental (no aprobado por la FDA) desarrollado originalmente para el virus del Ébola y no está disponible comercialmente. La cloroquina y la hidroxicloroquina pueden producir efectos secundarios graves, especialmente en el corazón, y no deben tomarse sin la prescripción y supervisión de un médico. El medicamento contra el VIH Kaletra fue estudiado en un ensayo clínico en China y se descubrió que no tiene ningún efecto sobre la infección grave por COVID-19. Finalmente, hay planes para realizar pruebas clínicas del medicamento para la presión arterial losartán basado en su efecto potencial sobre la forma en que el virus ingresa e infecta las células. Sin embargo, no existe evidencia científica de que alguno de estos medicamentos pueda prevenir la infección por COVID-19 o pueda usarse para tratar la infección en el hogar, por lo que no debe tomar ninguno de ellos sin consultar a su equipo de tratamiento del mieloma. Es probable que le aconsejen que no los tome.
+ ¿Debo tener antibióticos en casa para tomar en caso de fiebre?
No recomendamos almacenar ni viajar con antibióticos. Los antibióticos tratan las infecciones bacterianas; no tendrán ningún efecto sobre un virus como COVID-19. Además, tomar antibióticos sin la supervisión de un médico fomenta el desarrollo de bacterias resistentes a los antibióticos. Si desarrolla una infección y fiebre, debe buscar atención médica en lugar de tratarse en casa sin la orientación de un médico.
+ Escuché que no debería tomar medicamentos antiinflamatorios no esteroides (AINE) en caso de infección por COVID-19.
Esto no se aplica a los pacientes con mieloma porque de todos modos no debe tomar AINE debido al alto riesgo de insuficiencia renal. Esta clase incluye ibuprofeno (Motrin), naproxeno (Aleve) y otros medicamentos que se encuentran en cualquier farmacia. Probablemente ya le hayan indicado que debe tomar acetaminofén (Tylenol) para la fiebre o el dolor, y medicamentos narcóticos para el dolor moderado-intenso. La crisis del COVID-19 no cambia esta recomendación; NO TOME AINE.  
+ Me recetan esteroides como parte de mi plan de tratamiento del mieloma y escuché que no debería tomarlos. ¿Es eso cierto?
Debe hablar con su médico acerca de continuar o suspender los esteroides como la dexametasona o la prednisona. La Organización Mundial de la Salud (OMS) emitió pautas recomendando contra los esteroides para el tratamiento de la infección grave por COVID-19 con dificultad respiratoria, pero esa recomendación se basó en los hallazgos de una enfermedad relacionada y solo se aplica a pacientes hospitalizados por una enfermedad grave. Otras agencias reguladoras como la FDA y la CDC no han emitido tales recomendaciones. Los esteroides son una parte importante de la mayoría de los tratamientos del mieloma, por lo que debe conversar con su equipo de tratamiento del mieloma sobre los riesgos y beneficios de continuarlos.
+ Tomo aciclovir o valciclovir para la profilaxis del herpes zóster. ¿Ayudará esto a prevenir la infección por COVID-19?
No. No hay evidencia de que el aciclovir o el valciclovir tengan algún efecto contra COVID-19. Aún debe seguir las pautas de distanciamiento social y buenas prácticas de higiene.
+ ¿Necesito tomar algún medicamento adicional durante la temporada de resfriados / gripe?
Muchos de los medicamentos aprobados para el mieloma múltiple requieren medicamentos profilácticos para protegerse contra las infecciones. Para los inhibidores del proteasoma (Velcade, Kyprolis, Ninlaro), recomendamos medicamentos antivirales para prevenir el herpes zóster. Para los agentes anti-CD38 (Darzalex, Sarclisa), recomendamos medicamentos antivirales para prevenir el herpes zóster y pruebas de exposición al virus de la hepatitis B. Si es positivo, recomendamos medicamentos para prevenir la reactivación del virus de la hepatitis B. Para un tratamiento prolongado a dosis altas de esteroides (> 120 mg de dexametasona / semana o equivalente durante más de un mes), debe hablar con su médico sobre la toma de antibióticos para prevenir un tipo de neumonía causada por un organismo llamado Pneumocystis jirovecii (anteriormente conocido como Pneumocystis carinii). No se recomiendan medicamentos adicionales en este momento específicos para COVID-19.
 

Many states offer mental health support during the COVID-19 pandemic.
Please check with your state Department of Health for more information.

Substance Abuse and Mental Health Services Administration’s (SAMHSA’s) Disaster Distress Helpline

1-800-985-5990
Or text TalkWithUs to 66746
(TTY 1-800-846-8517)

 

Multiple Myeloma patients are at greater risk for infections such as COVID-19.
Our MMRF Patient Navigation Center is standing by to answer any additional questions you may have; feel free to call at any time: 888-841-6673.

 

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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

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

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)

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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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

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

Accredited activities

View Activity

Topic Date Link
SOHO: Relapsed/Refractory Multiple Myeloma: What’s Next for Patients? Expires: September 24, 2021 Learn More
Treatment Options for Patients Who Have Relapsed From or Are Refractory to Multiple Therapies Expires: September 30, 2021 Learn More
Oral Therapy for Outpatient Management of Multiple Myeloma: Options for the COVID-19 Era Expires: October 15, 2021 Learn More
ONS: Immunotherapy for Multiple Myeloma: From Antibodies to CAR T-Cell Therapy Expires: October 29, 2021 Learn More
Managing Myeloma: Where We Are, Where We’re Going, and Where We SHOULD Be Going (Time to Choose Sides!) Live Webinar - Friday, December 4, 2020 8:00AM PT View Slides
RME Hot Seat: Immunotherapy for Multiple Myeloma Expires: January 4, 2022 Learn More
Managing Myeloma: Where We Are, Where We’re Going, and Where We SHOULD Be Going (Time to Choose Sides!) Expires: January 15, 2022 Learn More

Ace the Case Series

Topic Date Link
Ace the Case: A 68-Year-Old Woman With Progressive Back Pain, Anemia, and Proteinuria Expires: July 28, 2021 Learn More
Ace the Case: A 62-Year-Old Man With Monoclonal Protein Detected on Routine Blood Work Expires: August 20, 2021 Learn More
Ace the Case: A 42-Year-Old Woman With Anemia and Elevated Serum Total Protein Expires: September 22, 2021 Learn More
Ace the Case: A 79-Year-Old Man With Anemia and High IgA Level Expires: October 19, 2021 Learn More
Ace the Case: A 59-Year-Old Man With Multiple Myeloma Relapsing While on Lenalidomide Maintenance Expires: November 24, 2021 Learn More
Ace the Case: A 71-Year-Old Woman With Multiple Myeloma Progressing Following Three Lines of Therapy Expires: December 9, 2021 Learn More

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

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



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.  

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Some of our Website may enable users to submit their own content for contests, blogs, videos, and other functions. Please remember that any data you submit or post as user-generated content to the Website become public data. You should exercise caution when deciding to disclose your personal, financial or other data in such submissions or posts. We cannot prevent others from using such data in a manner that may violate these Disclosures, the law, or your personal privacy and safety. We are not responsible for the results of such postings.








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
Paul G. Richardson, MD April 10, 2021 Virtual Register Today
Faith E. Davies, MBBCh, MD
Gareth J. Morgan, MD, PhD		 March 20, 2021 Virtual Register Today
Amrita Y. Krishnan, MD January 23, 2021 Virtual View Recording View Slides
Gregory J. Orloff, MD November 7, 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
Larry D. Anderson, Jr., MD, PhD
Ankit Kansagra, MD		 March 21, 2020 Virtual View Recording View Slides

Expert Sessions

Program Chair(s) Date Location of Event
Melissa Alsina, MD
Saad Z. Usmani, MD		 February 27, 2021 Virtual Register Today
Irene Ghobrial, MD
Shaji K. Kumar, MD		 December 19, 2020 Virtual View
Recording		 View Slides
Jonathan L. Kaufman, MD
Sagar Lonial, MD		 September 26, 2020 Virtual View Recording View Slides
Robert Z. Orlowski MD, PhD
Elisabeth E. Manansanch, MD		 May 2, 2020 Virtual View Recording View Slides

Patient Webinars

Webinar Topic Date
Supportive Care for Myeloma Patients Wednesday, March 24, 2021 1:00PM - 2:00PM ET Register Today
Learn Your Labs Tuesday, February 9, 2021 1:00PM - 2:00PM ET View Recording View Slides
Maintenance Therapy for Myeloma Patients Thursday, January 28, 2021 1:00PM - 2:00PM ET View Recording View Slides
Multiple Myeloma Highlights From the 2020 American Society of Hematology (ASH) Meeting &
Exposition 		Thursday, December 17, 2020 1:00PM - 2:00PM ET View
Recording		 View Slides
Updates on New Drug Approvals and the Expanding Therapeutic Landscape in Multiple Myeloma Tuesday, November 17, 2020 1:00PM - 2:00PM ET View
Recording		 View Slides
The Latest Updates on Precision Medicine in Multiple Myeloma Wednesday, October 28, 2020 1:00PM - 2:00PM EDT View
Recording		 View Slides
Autologous Stem Cell Transplantation for Multiple Myeloma Wednesday, September 16, 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 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
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
Managing Myeloma During the COVID-19 Pandemic Wednesday, May 20, 2020 1:30PM – 2:30PM EDT View Recording View Slides
Smoldering Myeloma Thursday, April 23, 2020 1:00PM EDT View Recording View Slides
Supportive Care Wednesday, March 4, 2020 1:00PM EDT View Recording View Slides
Learn Your Labs Tuesday, February 4, 2020 1:00PM EDT View Recording View Slides

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Please note that at all times you are responsible for updating your Personal Data to provide us with your most current email address. In the event that the last email address that you have provided us is not valid, or for any reason is not capable of delivering to you the notice described above, our dispatch of the email containing such notice will nonetheless constitute effective notice of the changes described in the notice.

If you do not wish to permit changes in our use of your Personal Data, you must so notify us prior to the effective date of the changes and discontinue using the Website. Continued use of our Website, following notice of such changes shall indicate your acknowledgement of such changes and agreement to be bound by the terms and conditions of such changes.

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  • to obtain a copy of your Personal Data in an easily accessible format.

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You also have the right to withdraw your consent to our processing of your Personal Data, when our processing is solely based on your consent. You can do this by discontinuing use of the Website, including by closing all of your online accounts with us and contacting us as set forth in the Contact Us section below to request that your Personal Data be deleted.  If you withdraw your consent to the use or sharing of your Personal Data for the purposes set out in these Disclosures, you may not have access to all (or any) of the Website, and we might not be able to provide you all (or any) of the Website. Please note that, in certain cases, we may continue to process your Personal Data after you have withdrawn consent and requested that we delete your Personal Data, if we have a legal basis to do so.  For example, we may retain certain information if we need to do so to comply with an independent legal obligation, or if it is necessary to do so to pursue our legitimate interest in keeping the Website safe and secure.

If you have any complaints regarding our privacy practices, you have the right to lodge a complaint with your national data protection authority (i.e., supervisory authority).

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.

In 2019, Mr. Riney started Lightchain Capital LLC, with a focus on various capabilities investing in early-stage biotech technologies with an emphasis on therapeutics for blood cancer and multiple myeloma.

Candice Del Rio

Candice Del Rio

MS, BSN, BA, RN – Manager, Patient Navigation Center

Candice Del Rio is the Manager of the Patient Navigation Center at the MMRF. She is responsible for overseeing the daily operations of the PNC and guiding myeloma patients through their disease journey. She most recently worked at the Massachusetts General Hospital for over 11 years as a Staff Nurse in the inpatient Hematology/Oncology unit and as a Clinical Research Nurse in the Bone Marrow Transplant Department. Prior to her career in nursing, she worked in marketing and advertising in the real estate industry for 4 years. She earned a BA degree in Communications with a concentration in Sociology from Boston College and completed her nursing education with BSN and MS degrees from Northeastern University.

 

Adrian Rosenkranz

Chief Operating Officer
Salesforce Essentials

Adrian Rosenkranz, a Multiple Myeloma caregiver, is the COO of Salesforce Essentials; in that role he’s responsible for steering the company’s operations, vision, and customer experience. With over a decade of experience in enterprise software, Adrian is widely respected for being a boots-on-the-ground leader with a track record of driving growth. Prior to his current position, Adrian held roles at Salesforce in Sales Strategy & Ops, Sales, and Corporate Marketing, giving him valuable experience in multiple revenue functions.  

Adrian serves on the board of the Stanford Athletics Buck/Cardinal Club, which supports all varsity sports at Stanford University. He has also served as an advisor for Harvard Business School's Kraft Precision Medicine program, using his experience with direct-to-consumer teams to help nonprofits accelerate precision medicine efforts via direct-to-patient engagement. 

Adrian earned his BS from Stanford University, where he also served as the kicker for the Stanford football team under Coach Jim Harbaugh. He currently lives in San Francisco, where he loves to exercise and explore the outdoors. 

 

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).

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. 

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.

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.

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.

 

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.

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.

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.

 

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.

 

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.

 

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 - Chief Administrative Officer and General Counsel

 

Karen Dietz, JD, MBA, is the Chief Administrative Officer and General Counsel. Karen is responsible for overseeing the Legal and Human Resource Departments, corporate governance, compliance, contributes to strategic planning, oversees planning and execution of the organization’s operating plans, and collaborates with other disease foundations to share insights from MMRF success.

Additionally, Karen has concentrated efforts on optimizing the governance structure of the MMRF’s subsidiary companies: Myeloma Investment Fund (MIF) and the Multiple Myeloma Research Consortium (MMRC). Karen has worked with the consortium sites and pharma companies to launch nearly 100 multi-center clinical trials including the first-ever myeloma platform trial, MyDRUG.

Prior to joining the MMRF in 2007, Karen worked as In-House Counsel at Océ Imagistics North America a subsidiary of Canon Printers, was the Legal Counsel for the United States Junior Chamber of Commerce, and worked at the Law Firm of Attorney Raymond Lubus, Corporate Payroll Services, Orion Mobility, and Praxair.

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.

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.

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.

 

 

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.

Annamarie K.Anna Marie K

50, 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 – President and Chief Executive Officer

 

Michael Andreini is the President and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). Michael brings nearly 15 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 developed strategies for biopharma, medical device, and non-profit organizations to drive innovation and operational excellence across a diverse set of business challenges including R&D and launch strategy, commercial due diligence and portfolio optimization, and organizational effectiveness. 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, Riverwoods Holdings, LLC

Paul Giusti is the former 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.

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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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.

 

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.

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.

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.  Prior to starting her own company she 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. In addition, she led the Risk Management Team and was responsible for the creation and implementation of Endo’s risk management programs. Additionally, she was Senior Director of Report Evaluation and Safety Surveillance for the Women’s Health Division and Consumer Products at Wyeth. 

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 (now Sidney Kimmel Medical College)in Philadelphia. She completed her residency at The Medical Center of Delaware, where she practiced obstetrics and gynecology for nine years. She still maintains privileges at the hospital.  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 has participated on the Quality and Safety Committee at Christiana Care Health Systems.

In addition, she is a board member at Eisenhower Medical Center, Rancho Mirage, California, and also sits on the quality improvement committee. Marie is named Chair, The Marie E. Pinizzotto, MD Chair of Academic Affairs, at Eisenhower Medical Center.

Dr. Pinizzotto is a director of The Carol A. Ammon Foundation, The Multiple Myeloma Research Foundation and the Palm Springs International Film Festival. She also 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 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.

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William S. McKiernan

President
WSM Capital, LLC

Bill McKiernan is president of WSM Capital, LLC, a private equity firm he founded to invest in payment and other technology companies. Prior to founding WSM Capital, Bill founded CyberSource Corporation in 1994. CyberSource provides payment processing and other related services to online businesses. He was Chairman and CEO for 16 years. In July 2010, Visa, Inc. acquired CyberSource in a transaction valued at $2 billion. Mr. McKiernan served as Executive Advisor to Visa, Inc. for two years following the acquisition before founding WSM Capital in 2012.  

Mr. McKiernan holds a BS from Boston College and an MBA from the Harvard Business School. Prior to founding CyberSource he held positions at Price Waterhouse, IBM, and McAfee Associates.

In addition to the MMRF, he serves on the boards of trustees of Boston College, Bellarmine College Prep, and American Ireland Fund and is a member of Harvard Business School Global Advisors.

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.

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Rodney Gilmore

Corporate and Business 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 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 (out of print as of 2019).

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, Paul Wiggin and George Seifert, 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

Karen E. Andrews

Senior Vice President and General Counsel
March of Dimes

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

Managing Partner and Founder
GHO Capital

Chairman of the Board
MMRF

Mike is an experienced healthcare industry senior executive who brings a 30+ years track record in operational and management positions.

In his former role as an Executive Vice President in the core leadership team at Quintiles (now IQVIA), Mike was instrumental to driving the international growth of a now leading global Clinical Research Organisation. Prior to Quintiles, Mike was a Senior Vice President at Charles Schwab, responsible for the global retail and internet organizations.

Mike currently sits on the boards of Envision, X-Chem, Ardena, BioAgilytix, Validant and Alcaliber and has overseen successful exits from Quotient Sciences and Caprion Biosciences.

Originally from the US and holding a bachelor’s degree in Behavioural Sciences from the Ohio State University, Mike has worked and lived across the USA, UK and Asia.

Paul Giusti

President
Riverwoods Holdings, LLC

Paul Giusti is the former 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.