About the MMRF

The MMRF is the largest nonprofit in the world focused on accelerating the cure for multiple myeloma. Our work is not done until each and every multiple myeloma patient has the answers they need. With our exceptional leadership, strategic collaboration and uniquely innovative approach, we are on the path to finding a cure for multiple myeloma.

Our mission

To discover and advance a cure for each and every multiple myeloma patient.

Our Culture

urgency

Urgency

We move fast. In the battle against cancer, we know time is of the essence — that’s why it’s imperative we work quickly and diligently when it comes to making the best decisions for patients. We streamline communications among partners and share critical data with researchers to accelerate a cure for each and every multiple myeloma patient.
innovation

Innovation

We believe in disruption. Curing cancer isn’t about solving problems — it’s about finding transformative solutions that change the way things are done forever. We tackle the big picture — like creating large, accessible clinical datasets — and all the little details — down to individuals’ DNA — to be on the cutting edge of cancer research.
results

Results

We believe innovative business practices make a big impact — and thanks to the business acumen of our leadership, we are a results-driven organization. We have helped bring 13 multiple myeloma drugs to market and many more are in the pipeline. Clinical trials for myeloma patients were a rare occurrence prior to the MMRF — so we opened over 80 clinical trials. Because of our relentless work in collaboration with our partners and the community, multiple myeloma patient survival rates have increased from 3 years to 10 years.

See how our work is changing cancer research

Learn more

Patient founded, patient-focused

The Multiple Myeloma Research Foundation (MMRF) was founded in 1998 by identical twin sisters Kathy Giusti and Karen Andrews soon after Kathy was diagnosed with multiple myeloma. With limited research funding, no effective treatments and few clinical trials in the pipeline, the life expectancy of the rare and fatal cancer was only 3 years.

Frustrated by the lack of treatments available to her, Kathy developed an innovative new approach to cancer research rooted in disrupting the status quo. Employing rigorous business models to create significant change, she has been instrumental in establishing collaborative research initiatives and opening clinical trials that are dramatically accelerating new treatments for myeloma patients and making immense progress in the field of multiple myeloma. She now uses her unique approach to work to defeat all cancer types as Co-Chair of the HBS Kraft Precision Medicine Accelerator, a $20M endowed program provided by Robert Kraft and the Kraft Family Foundation.

Kathy is a champion of patient engagement, open access to medical data and advancing the business of sequencing. At HBS, she is part of a group of best-in-class leaders from across science, business and technology, speeding breakthroughs in precision medicine for all cancers.

Meet our leaders

leadership

Executive leadership team

Our executive team works to push the industry forward by executing innovative, groundbreaking research initiatives that accelerate the development of treatments for multiple myeloma.
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directors

Board of directors

Industry leaders and investors who are deeply committed to curing cancer work together toward this common goal on our Board of Directors.
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illustration _ people _ honorary board

Honorary board

We are very appreciative of the time and effort our honorary board members put into helping to raise funds and awareness for multiple myeloma research.
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Financials

An extraordinary 90% of the MMRF total budget goes directly into research and related programming, consistently earning us top rankings from the nation’s leading charity evaluators. See our accreditations.

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News and press

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July 16, 2020
July 16, 2020

MMRF CureCloud® Launch Event – Watch It Now!

July 16, 2020
The MMRF launched the MMRF CureCloud® on July 14th – a first-of-its-kind research study that includes free, at-home genomic testing.  Revisit the momentous launch event for […]
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July 14, 2020
July 14, 2020

A nonprofit just announced a 23andMe-like genomic sequencing model for a rare cancer—but it’s free

July 14, 2020
by Sy Mukherjee  The Multiple Myeloma Research Foundation (MMRF) is launching a new effort to provide cancer patients with personalized recommendations for dealing with their disease. […]
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July 14, 2020
July 14, 2020

MMRF Launches CureCloud to Democratize Healthcare for Cancer Patients

July 14, 2020
CureCloud’s patient-driven, real-world data will help inform more precise, tailored treatments and smarter decisions for all patients. July 14, 2020, NORWALK, Conn. – The Multiple Myeloma […]
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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 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.



By filling out this form you are agreeing to receiving MMRF communications. You may unsubscribe at any time via your email.

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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

Register Today

Topic Date Link
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 Learn More

View Activity

Topic Date Link
ASH: Current Obstacles in Myeloma Management: Debating the Evidence Expires: January 25, 2021 Learn More
Treatment Options for Patients Who Have Relapsed From or Are Refractory to Multiple Therapies Webinar - Thursday, August 20, 2020 Link Coming Soon
SOHO: Relapsed/Refractory Multiple Myeloma: What’s Next for Patients? Expires: September 24, 2021 Learn More
ONS: Immunotherapy for Multiple Myeloma: From Antibodies to CAR T-Cell Therapy Webinar - Thursday, September 17, 2020 Link Coming Soon

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

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

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

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



Your Rights

  • Upon request, we will provide you with information about whether we hold any of your Personal Data along with any details required to be provided to you under applicable law.  In certain cases, you may also have a right to:
  • rectify any of your Personal Data that is inaccurate;
  • to restrict or limit the ways in which we use your Personal Data;
  • to object to the processing of your Personal Data;
  • to request the deletion of your Personal Data, and
  • to obtain a copy of your Personal Data in an easily accessible format.

To submit a request, please contact us as set forth in the Contact Us section below.  We will respond to your request within a reasonable time frame.

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).

Links to Third Party Sites [and Social Media]

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.

Updates to the Disclosures

Any changes to these Disclosures will be effective upon the earlier of thirty (30) calendar days following our dispatch of an email notice to you or thirty (30) calendar days following our posting of notice of the changes on the Website. These changes will be effective immediately for new users of our Website.

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.

Managing Communication Preferences

Printed Materials: To opt out of receiving printed marketing materials at your postal address, such as advertisements, flyers or postcards, please write to us at the address below. Please be sure to include your name and mailing address exactly as they appear on the printed marketing materials you received.

Emails: To opt out of receiving marketing communications via email, please send an unsubscribe request to the email address below or click on the unsubscribe link at the bottom of the email that was sent to you and follow the directions on the resulting web page. Please note that you may continue to receive certain transactional or account-related electronic messages from us.

Text Messages: If you have consented to receive text messages, you may opt out of receiving them by using the method provided in the text message or by contacting us as set forth in the Contact Us section below.

Push Notifications: To opt out of receiving push notifications, please set your preferences within your device setting menu.

Patient Webinars

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

Expert Sessions

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

Patient Summits

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

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.

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

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.  

Marie E. Pinizzotto, M.D., MBA

President and CEO
Carol A. Ammon Foundation

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

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

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

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

Michael Reinert

Partner
Fox Rothschild LLP

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

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

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

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

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

Rodger Riney

Former CEO and Founder
Scottrade

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

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

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

Steven Shak, MD

Co-Founder, Chief Scientific Officer
Genomic Health

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

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

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

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

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

Meryl Zausner

Former Chief Financial Officer
Novartis Corporation

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

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

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

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

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

Sarah Coulter

RN, OCN

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

 

Kristen Donadio

RN, BSN

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

Greg Rubenstein - Vice President of Marketing and Communications

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

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

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

Mindy Flinn, MBA – Vice President of Development

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

Grace Allison

RN, BSN, OCN, RN-BC

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

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.

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.

 

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.

 

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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.

 

Paul Giusti – President and Chief Executive Officer 

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

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

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

Michael Andreini – Chief Operating Officer

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

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. 

Randi S.Randi S

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

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

Ethan H.Ethan H

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

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

Casey Joe W.Casey Joe W

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

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

Craig C.Craig C

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

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

Patti B.Patti B

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

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

Tricia C.Tricia C

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

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

Anna Marie K.Anna Marie K

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

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

Carmen P.Carmen P

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

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

Andrew G.Andrew G

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

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

Jessie D.Jessie D

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

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

Jeffery G.Jeffrey G

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

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

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.

 

 

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.

 

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.

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.

 

 

Karen Dietz, JD, MBA - General Counsel and Secretary

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

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.

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.

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. 

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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.

 

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.

Paul Giusti

President and Chief Executive Officer
MMRF and MMRC

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

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

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

Mike Mortimer

Executive Partner and Founder
GHO Capital

Chairman of the Board
MMRF

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

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

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

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

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.

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.

Karen E. Andrews

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

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

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

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

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

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

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.

Rodney Gilmore

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

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

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

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

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

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

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

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

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.

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.

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.

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.

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.

William S. McKiernan

Former Chair and CEO
CyberSource Corporation

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

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

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