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Winter 2018

The Magazine of the Multiple Myeloma Research Foundation

How the MMRF is defining the pinnacle of Precision Medicine. MMRF CureCloud

An update from our beta launch.

MMRF at ASH 2018

New insights driving new discoveries.

MMRF Prevention Project

What is a liquid biopsy? Your questions, answered.


Dear Friends, Imagine that doctors could pinpoint exactly what genetic mutations and other molecular abnormalities were behind your cancer. Now imagine that knowledge could be used to match you with the very best treatment for your cancer. This breakthrough approach to treatment — known as precision medicine — is the MMRF’s singular, unwavering focus. Your support has allowed us to be relentless in our pursuit of precision medicine, investing boldly in science and technology that has fundamentally transformed our understanding of multiple myeloma and how to treat it most effectively. Building the first multicenter multiple myeloma tissue bank was a critical first step in this process; it provided researchers with the tools needed to sequence the multiple myeloma genome in its entirety. This revealed for the first time the genetic features that affect how the disease progresses and how it responds to treatment. Insights from this research milestone laid the foundation for the landmark MMRF CoMMpass StudySM, which revealed that multiple myeloma is made up of at least 12 different sub-types that each require a distinct treatment plan. Our most ambitious research program to date, the MyDRUG study, not only builds upon these discoveries, but translates them into action for myeloma patients. Rather than testing a single drug, the MyDRUG study tests several new drugs designed specifically for patients with six of the sub-types identified through CoMMpass. This is an entirely new kind of clinical trial in multiple myeloma — one that will speed new treatments and, most importantly for patients today, match them based on their genomic data to treatments that are most likely to be beneficial.

A LETTER FROM THE PRESIDENT & CEO

We are incredibly excited about MyDRUG, and I look forward to sharing more with you about it in the months to come. In the meantime, you can read more about the MyDRUG study in this issue of the accelerator. With warmest wishes for the holidays,

Paul Giusti President and Chief Executive Officer


accelerator

The Magazine of the Multiple Myeloma Research Foundation | Winter 2018

04 MMRF

10 MMRF AT

An update from our beta launch

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MMRF MyDRUG

CURECLOUD

MMRF Honored for 15th Year with Highest Rating!

ASH 2018

New insights driving new discoveries

The pinnacle of Precision Medicine

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MINIMAL RESIDUAL DISEASE

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SIGNATURE EVENTS

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IMMUNOTHERAPY INITIATIVE

• Greenwich Wine + Food Benefits the MMRF

• MMRF Laugh for Life: New York

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MMRF PREVENTION PROJECT

16 COMMUNITY SPOTLIGHT

11 CLINICAL TRIAL HIGHLIGHTS

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17 ENDURANCE EVENTS

MMRF RESOURCES

• Team for Cures 5K Walk/Run

• Moving Mountains for Multiple Myeloma

• Road to Victories

• There’s a New Cancer in Town

• IRONMAN® Lake Placid

• Patient Navigation Center

18 MMRF FOUNDER & CHIEF MISSION OFFICER

 • MMRF Webinar Series • MMRF Patient Summits

14 MMRF LEADERSHIP

• Spotlight: Susan Marvin and Paula Heppner

• Introducing Hugh Martin

SPONSORS: We thank our sponsors for their support of accelerator, The Magazine of the Multiple Myeloma Research Foundation.

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P AMTGM HE ER/ FSM ECMCURTRFI EOM CNO L OTD IUE TLDL ™E

MMRF CURECLOUD GIVES PATIENTS POWERFUL DATA ™

Every myeloma patient is different, but we imagine a world where they all have specific genetic and immune information about their disease and access to personalized treatments. Precision medicine holds the key to a cure for each patient. Thanks to the MMRF CoMMpass StudySM and the information in our Patient Data Bank, we’ve learned a lot about myeloma and the best ways to treat it — but there is so much more to learn. In order to find a cure, we need more data — tens of thousands of patient samples. Acquiring this information the traditional way — enrolling through a patient’s doctor — is expensive and time-consuming. The good news is that technology is on our side. Launching in early 2019, the MMRF CureCloud™ will give patients the power to directly and personally contribute to the search for a cure. To enroll, patients consent to participate in the study and e-sign an online medical waiver for the MMRF. By signing the waiver, patients allow access to their electronic health record data. Then, they choose an appointment time and, within a few days, a local phlebotomist comes to the participant’s home to collect a blood sample for sequencing. Once their clinical, genomic (and eventually immune) data is loaded into CureCloud, participants will be able to log in to see their sequencing data and better understand their treatment options. They will learn how they compare to patients with similar myeloma sub-types and clinical characteristics. Along with their physician, they will make decisions about how to treat their myeloma with the most up-to-date information. We believe that each individual has the power to move us closer to a cure. When patients choose to contribute their data, our understanding about and insight into multiple myeloma expands. Each new addition is another chance at discovery. Working together we will we find the best treatment option for every patient.

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M I N I M A L R E S I D U A L D I S E A S E

MMRF LEADS EFFORTS TO UNDERSTAND MINIMAL RESIDUAL DISEASE On September 14, 2018, the MMRF and Memorial Sloan Kettering Cancer Center (MSKCC) hosted the fifth annual meeting assessing progress toward approval of Minimal Residual Disease (MRD) as a surrogate endpoint in myeloma clinical trials. The meeting, co-chaired by the MMRF Senior Vice President of Research Daniel Auclair, PhD, and C. Ola Landgren, MD, Chief of Myeloma Service at MSKCC, was the latest step in the myeloma community’s efforts to help myeloma patients in treating their disease. MRD is the measurement of the number of cancer cells still remaining after treatment. There are several very sensitive methods that can detect even a single cancer cell in a sample of one million cells. Studies of MRD in myeloma patients show that negative MRD status correlates to longer progression-free survival and overall survival in newly diagnosed patients. This suggests that MRD status could be used to determine how well a patient is responding to their myeloma treatment, but more work needs to be done to learn exactly what MRD negativity means for myeloma patients. The MMRF and MSKCC are working closely with collaborators in academia, drug companies, and the Food and Drug Administration (FDA) to determine when and how often patients need MRD testing, and what MRD levels mean for treatment decisions. Answering these questions is critical to bringing MRD forward as an approved way to determine the success of a clinical trial and bringing new treatments to patients.

Benefits of MRD Testing Once approved, the ability to assess MRD in patients will move the myeloma field forward in a number of ways: • Providing an accurate and definitive way to determine how well patients respond to treatment. • Detecting relapse earlier. • Potentially shortening and lowering the costs of clinical trials.

September’s meeting included reports from investigators using MRD in clinical trials for newly diagnosed and relapsed refractory patients and MRD measurement in other clinical settings including immunotherapy (CAR T-cell trials) and maintenance therapy. Investigators also discussed new MRD measurement technologies, including blood-based testing versus marrow-based testing, and testing by genomic sequencing, and whether MRD can be used for treatment decisions at this time. The meeting produced the concept of an MRD Roadmap, which identifies a route to getting FDA approval for MRD testing as a surrogate clinical trial endpoint. This involves new clinical trials that use a standardized test for MRD and measure MRD at consistent times in disease progression. a cce l e rat o r • Wint e r 2 0 1 8

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UPDATES FROM OUR IMMUNOTHERAPY INITIATIVE INVESTIGATORS I M M U N O T H E R A P Y

Now in its second year, our $15 million Immunotherapy Initiative seeks to understand and use the body’s immune system to fight myeloma. The main work of the Initiative is being carried out by three leading research programs. All the efforts will contribute valuable immune data to our Data Bank and will move us closer to more precision medicine solutions for myeloma.

David Avigan, MD

Ivan Borrello, MD

C. Ola Landgren, MD, PhD

Beth Israel Deaconess Medical Center

Johns Hopkins Kimmel Cancer Center

Memorial Sloan Kettering Cancer Center

Dr. Avigan’s research network is researching the use of cellular therapies and personalized tumor vaccines for treating myeloma. Laboratory studies are providing evidence that modifying T-cells with chimeric antigen receptors (CAR) that recognize two proteins on the surface of myeloma cells (BCMA and CD38) is more effective at killing myeloma cells than CAR T-cells that recognize only one surface protein. Early results show that the vaccine stimulates immune cells and improves their ability to recognize myeloma cells and kill them. This combination of CAR T-cells with cellular vaccines holds great promise as a therapy for myeloma.

Dr. Borrello’s research network is characterizing the effects of bone marrow microenvironment on disease progression and immune response to therapy. The group is uncovering differences in the immune cells present in the bone marrow of healthy, monoclonal gammopathy of unknown significance (MGUS), smoldering multiple myeloma (SMM), and active myeloma patients. Dr. Borrello‘s next steps will focus on understanding the role of these cells in suppressing immune responses. Additional studies include understanding the immune changes in patients receiving maintenance therapy of an immune modulator with or without a proteasome inhibitor; the goal in this effort is to define an immune signature related to persistent minimal residual disease (MRD).

Dr. Landgren’s research network is developing a pipeline of cutting-edge tests designed to uncover how a patient’s myeloma and immune cells respond to immunotherapy, with the goal of identifying ways to check both response and toxicity. This network is building a collaborative approach to sharing limited patient samples across multiple research sites for analysis. The data from these studies will be shared amongst research sites for correlative studies.

MARK HAMILTON, PHD

IMMUNOTHERAPY INITIATIVE RESEARCH PROJECT MANAGER, MMRF For Mark, cancer is personal. While completing his PhD, he lost his father to cancer. Mark has worked as a cancer researcher in world-class facilities like the Cleveland Clinic Foundation, Eli Lilly, and Bayer ever since. Mark oversees the three research programs funded under the MMRF Immunotherapy Initiative. He works closely with investigators to ensure that research project goals and milestones are met. “If we can understand what is happening to a patient’s immune system throughout the course of myeloma, we should be able to provide treatments that re-engage their immune cells to recognize and destroy cancerous cells,” he says.

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P R E V E N T I O N

THE MMRF PREVENTION PROJECT The MMRF is partnering with six leading researchers to accelerate efforts to prevent or delay disease progression thanks to support from the Perelman Family Foundation.

CATCHING UP WITH ONE OF OUR LEAD PREVENTION PROJECT INVESTIGATORS

All multiple myeloma patients are very familiar with a bone marrow biopsy. The test is currently the gold standard for myeloma, but it is unpleasant and painful. Doctors try to limit how often they perform bone marrow biopsies to spare patients the discomfort and anxiety that often accompany the procedure. A new test in development could eliminate the need for bone marrow biopsy for myeloma patients. Here, Irene Ghobrial, MD, Director of the Clinical Investigator Research Program at Dana-Farber Cancer Institute (a member of the Multiple Myeloma Research Consortium (MMRC)), answers questions about liquid biopsy.

Irene M. Ghobrial, MD Dana-Farber Cancer Institute

Q: What is a Liquid Biopsy? Liquid biopsy is a test that measures two things: The first is circulating tumor DNA (ctDNA), small fragments of DNA that are shed by the tumor cells into the blood. The second is circulating tumor cells, which are myeloma cells found in the blood.

Q: Will Liquid Biopsies Eventually Replace Bone Marrow Biopsies? This is the ultimate goal. We know that bone marrow biopsies are unpleasant for patients, which is why we limit how often we perform them. Liquid biopsy is an attractive alternative because it just involves drawing a blood sample.

Q: How Can Blood Monitoring Help High-Risk Patients With Smoldering Myeloma? Because smoldering myeloma patients don’t show symptoms, frequent bone marrow biopsy is inconvenient and might not be useful. But monitoring their progress is critical in case they progress to active myeloma. Liquid biopsy would allow doctors to easily track genetic changes in these patients’ blood and start treatment as soon as possible if it becomes necessary.

CARLETHA HAWLEY

CORPORATE PARALEGAL, MMRF With a BS degree in international business and almost a decade as a paralegal, Carletha’s talents and experience are critical to our work. Every day, she supports the legal process behind our research — everything from contracts to trademarks and study agreements. “The best part of my job is knowing that what I am doing plays an important part in the overall research process,” she says. “I am hopeful that families will have access to treatment that will cure multiple myeloma.” When she’s not in the office, Carletha volunteers in community theatre and mentors at-risk youth.

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P R O J E C T

Q&A with Dr. Irene Ghobrial


M Y D R U G M M R F

LAUNCHING THE PINNACLE OF PRECISION MEDICINE

The MMRF is the leader in precision medicine for myeloma patients. Every person living with myeloma should receive the right treatment at the right time for their specific form of multiple myeloma. The model that we’ve used to achieve this goal has resulted in many firsts: FIRST TO BUILD A MULTICENTER MYELOMA TISSUE BANK Myeloma tissue bank created by the MMRF becomes a groundbreaking resource for researchers.

FIRST TO SEQUENCE MYELOMA GENOME

FIRST TO LAUNCH DATA IN PUBLIC DOMAIN

First actionable mutations found as a result of MMRF sequencing the myeloma genome.

Longitudinal genomic and clinical data from CoMMpass identifies 12 myeloma sub-types

Now we are embarking on another important “first”. The MyDRUG (Myeloma — Developing Regimens Using Genomics) trial is a platform study, an innovative new trial design in which multiple treatments will be tested at the same time. As the first trial of its kind for myeloma, MyDRUG will accelerate the delivery of new, targeted treatments that are used in other cancers to myeloma patients.

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MyDRUG Platform Trial (NCT03732703) DNA Sequencing to Look for Mutations and Alterations in Myeloma Cells No Detectable “Actionable” Alterations

RAF/RAS Mutations

IDH Activating Mutations

CDK Pathway Activating Alterations

FGFR3 Activating Alterations

Other Activating Alterations

TWO CYCLES

Other

Cobimetinib + Dex

Enasidenib + Dex

Abemaciclib + Dex

Erdafitinib + Dex

Other

Other + IPD

Cobimetinib + IPD

Enasidenib + IPD

Abemaciclib + IPD

Erdafitinib + IPD

Other Agent + IPD

TWO CYCLES

M M R F

Daratumumab + IPD*

t(11;14)

Venetoclax + IPD

*Ixazomib Pomalidomide Dexamethasone

What is a Platform Trial?

MyDRUG is a groundbreaking precision medicine trial designed and funded by the MMRF. It is the first trial of its kind exclusively for multiple myeloma patients and promises to bring novel therapies from other cancers to myeloma patients. All of the treatments under study in MyDRUG were designed to target the genetic mutations or other unique features of an individual’s cancer.

The MyDRUG clinical trial studies the impact of several different drugs that target the genetic mutations and other molecular abnormalities identified in CoMMpass. This kind of clinical trial is known as a platform study. Unlike traditional clinical trials, which test one drug or a single combination of drugs, platform trials have the potential to accelerate the speed by which new treatments are tested while more efficiently matching patients to the most promising treatments. It is the first and only clinical trial of its kind in multiple myeloma.

What Makes MyDRUG Different? MyDRUG will help patients indefinitely. New arms will be added as new insights, technologies, and mutations are discovered. MyDRUG will change the way every patient with multiple myeloma is treated.

How Can I Learn More? MyDRUG will be available at 17 Multiple Myeloma Research Consortium sites. We encourage patients to contact the nurse navigators at the MMRF Patient Navigation Center (866-603-MMCT or PatientNavigator@TheMMRF.org), who can answer their questions and connect them to an enrolling site. For additional information, please visit TheMMRF.org/MyDRUG.

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M Y D R U G

What is MyDRUG?


S M

S T U D Y C O M M PA S S M M R F

ASH 2018:

New Insights From the MMRF CoMMpass StudySM Continue to Drive Discoveries in Myeloma. The MMRF CoMMpass StudySM, a $40 million effort that created the largest genomic dataset of any cancer, continues to fuel new discoveries in myeloma. At the recent 60th American Society of Hematology (ASH) meeting in San Diego, many MMRF researchers presented new data and discoveries vital to our search for a cure. More than 30 abstracts detailed new findings about myeloma and its treatment, bringing the total number of CoMMpass-related publications to more than 80.

Major Themes Recent CoMMpass research focuses on identifying which patients are high-risk and likely to see their disease progress rapidly. Knowing which patients are high-risk is crucial to being able to offer the right treatment. CoMMpass data is starting to reveal some markers for high-risk disease that will help identify these patients before they start treatment. Also important is discovering which genetic types of the disease respond best — or don’t respond at all — to various treatments. CoMMpass data is helping researchers identify which mutations may cause resistance to treatment as well as which mutations help identify patients who will respond best to certain treatments.

The Future for Every Patient Of course, finding new targets for treatment is crucial to finding a cure for every patient. Information collected through CoMMpass continues to allow researchers to identify new targets for treatment as well as new drugs to treat myeloma. “Multiple myeloma is a disease with a high degree of genetic variation from patient to patient. CoMMpass gave us the insight that there are at least 12 distinct sub-types. We still are uncovering what drives each independent sub-type,” said Jonathan Keats, PhD, of the Translational Genomics Research Institute. “Thanks to the MMRF’s willingness and initiative to take on the incredible task of building CoMMpass and making the data public for researchers to freely access, we are continuing to identify and understand these drivers, which is crucial for helping us better treat each patient.”

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Clinical Trial Highlights from ASH 2018 C L I N I C A L

The Multiple Myeloma Research Consortium (MMRC), the MMRF clinical network of 25 cancer research centers in the United States and Canada, evaluates new drug combinations for their safety, efficacy and feasibility in Phase I and II clinical trials. To date, the MMRC has conducted over 81 clinical trials, 25 of which are currently ongoing. Three trials reported new findings at the recent ASH meeting:

T R I A L S

CLINICAL TRIAL ID: NCT02253316 Ninlaro® (ixazomib)-Revlimid® (lenalidomide)-Dexamethasone (IRd) Consolidation Following Autologous Stem Cell Transplantation in Patients with Newly Diagnosed Multiple Myeloma: A Large Multi-Center Phase II Trial ELIGIBLE PATIENTS: Newly diagnosed patients undergoing autologous stem cell transplant during first-line treatment. Study enrollment is scheduled to end in Q1 of 2019. KEY FINDINGS: Ninlaro-Revlimid-dex (IRd) consolidation following ASCT appears to be safe and effective. This all-oral regimen is convenient for patients and simplifies follow-up.

CLINICAL TRIAL ID: NCT01441973 Phase II Trial Combination of Empliciti® (elotuzumab)-Revlimid® (lenalidomide)Dexamethasone in High-Risk Smoldering Multiple Myeloma ELIGIBLE PATIENTS: This study enrolled 50 patients with high-risk smoldering multiple myeloma. Enrollment ended in December 2016. KEY FINDINGS: The combination of Empliciti-Revlimid-dex is well tolerated and effective. No patients in the study have progressed to active myeloma.

CLINICAL TRIAL ID: NCT02765854 Phase II Trial of Ixazomib and Dexamethasone versus Ixazomib, Dexamethasone and Lenalidomide, Randomized with NFKB2 Rearrangement (Proteasome Inhibitor NFKB2 Rearrangement Driven Trial, PINR) ELIGIBLE PATIENTS: Patients 18 years and older who have relapsed with less than four lines of therapy. KEY FINDINGS: In this Phase II trial, patients received either Ixazomib-Dex (ld) alone or Ixa-Dex plus Lenalidomide based on the status of NFKB2 rearrangement in plasma cells. Preliminary results show that Id is more effective for patients without NFKB2 rearrangement. Question about clinical trials? Please call our Patient Navigation Center at 1.866.603.6628. Visit MyelomaTrials.org to search for clinical trials.

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This fall, we hosted three well-attended Patient Summits in Nashville, Tennessee, Washington, DC and St. Louis, Missouri. The Nashville summit featured a live webcast that allowed many patients and caregivers to be part of the event without having to leave home. All MMRF Patient Summits offer the opportunity to learn about multiple myeloma, new treatments, and hot topics such as MRD and precision medicine from our esteemed and dedicated faculty.

The seminar was great, I learned so much! I have high-risk smoldering multiple myeloma, and thank you for coming to Nashville! MARY SHORT | NASHVILLE, TN

You can always find slides and recordings from these meetings at TheMMRF.org/Patient. Our Summit series will resume in 2019, so be sure to check our calendar and join us.

To view past summits and find upcoming events, visit TheMMRF.org/Patient

M M R F

R E S O U R C E S

MMRF PATIENT SUMMITS

MMRF WEBINARS: Past Recordings Now Available

Between July and November this year, we hosted five webinars on topics that are important to both patients and caregivers: • Immunotherapy (two webinars) • New and existing therapies for relapsed/refractory patients

• Caregivers as part of the myeloma care team

The webcasts and webinars the MMRF provides are a valuable service. We appreciate all the time and effort you put into making your programs so outstanding in every way. PAT HENTZ | TALLAHASSEE, FL

• Myeloma in the African-American community

These, along with all of our past webinars, are available online for viewing at any time. Check back on our website for more webinar topics and dates in 2019!

To view all past webinars and to register for upcoming events, visit TheMMRF.org/Webinars

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M M R F

THERE’S A NEW CANCER IN TOWN

R E S O U R C E S

Bringing Myeloma Awareness to the African-American Community.

African-Americans are two to three times more likely to be diagnosed with myeloma than people of other ethnicities. The symptoms are often misunderstood and many patients are misdiagnosed. In 2018 we launched There’s a New Cancer in Town, a program focused on the African-American community designed to raise awareness of myeloma symptoms, the importance of knowing the latest treatments, and the reason to participate in clinical trials. Pilot programs were held in Washington, DC at the Mount Airy Baptist Church, in Southaven, Mississippi at the Brown Missionary Baptist Church, and in Oakland, California at the Allen Temple Baptist Church. In addition to myeloma education and awareness, each program included presentations from several myeloma patients about their patient journeys. All of the events were well attended and we received enthusiastic responses from participants. With these encouraging results, we plan to expand this program next year!

PATIENT NAVIGATION CENTER

Connect with the MMRF’s expert nurse navigators today to answer your questions and to help inform your treatment decisions. We can provide insight and information on myeloma and make referrals for: •A  vailable Resources

• Multiple Myeloma Experts

• Clinical Trials

• Treatment Centers

The MMRF nurses are empathetic and a good resource for information and providing contacts to find information. My navigator is helpful and knowledgeable about multiple myeloma. I would recommend them to any patient.” BEVERLY J. FIGG | JEFFERSON CITY, MO

Contact us to learn more Monday–Friday: 9am–7pm et Phone: 1-866-603-6628

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Clinical Trials: TheMMRF.org/TrialFinder Email: PatientNavigator@TheMMRF.org

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BP OA AG RE D / S OE FC TD I I OR NE CT TI O T LR ES

SPOTLIGHT: SUSAN MARVIN AND PAULA HEPPNER For MMRF Board of Directors member Susan Marvin and her niece Paula Heppner, supporting the MMRF is entirely personal. Susan’s sister and Paula’s mother, Peg, was diagnosed with myeloma in 2006, and Peg’s husband Sam was diagnosed in 2015. “When Peg was diagnosed, I had no clue what it was,” said Susan. “And I felt so scared and wanted to find hope. I didn’t want to accept the diagnosis and what it meant.” Luckily, a business associate of Susan’s pointed them to the MMRF. “And all of a sudden, there was all of this drive, and energy, and education, and research, and hope that was really filling us and equipping us to look for the best care possible,” said Paula. Although Peg and Sam have both passed away, Susan and Paula remain involved with and supportive of the MMRF. The MMRF Prevention Project is especially near and dear to both of their hearts. “Having lost both of my parents, I have a real drive to know what’s causing this disease,” said Paula. For Susan, who spent 20 years as President of Marvin Windows and Doors, the MMRF’s business model makes all the difference in getting patients what they need. “So many of the MMRF’s approaches are from the business world. In the nonprofit world, all too often there’s an awful lot of heart, but not enough action. With the MMRF, I know that every dime goes to the most critical research that will help patients. We’re just big fans. Big fans of the MMRF.”

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INTRODUCING HUGH MARTIN The MMRF is pleased to announce that Hugh Martin has joined our Board of Directors. Mr. Martin was diagnosed with multiple myeloma in the summer 2009, after learning the disease had destroyed his T9 vertebra. At the time he was the CEO of tech startup Pacific Biosciences and was juggling not only the personal implications of being diagnosed with cancer, but also the implications for his business and employees. From the beginning, he consulted with the MMRF for information and advice about treatment. He responded well to that treatment and by early 2010 was in remission — a remission that’s allowed him to continue his 35-year track record as the leader of cutting-edge technology companies, new ventures, and high-growth businesses. In 2011, he was named CEO for Fortune magazine’s ‘Executive Dream Team: The startup edition,’ for his renowned management skill and prowess in taking two different companies (Pacific Biosciences and ONI Systems) public. Most recently, the World Economic Forum recognized Hugh as a Technology Pioneer.

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P SA IGGE N/ AS TE UC RT EI OENV ET NI T LS E

GREENWICH WINE + FOOD BENEFITS THE MMRF This year, the MMRF was thrilled to partner with Serendipity magazine as the charity beneficiary of the annual two-day Greenwich Wine + Food Festival, Presented by PepsiCo. Attended by over 4,000 guests, the event raised funds for the MMRF and awareness in the community. On Friday night at the Opening Night Master Chef Wine Dinner, the MMRF honored Greenwich residents and MMRF Ambassadors Elizabeth and Traver Hutchins with the Spirit of Hope Award. President and CEO Paul Giusti addressed the sold out crowd, highlighting the MMRF’s mission and hope for the future. The event closed Saturday night with electric performances by Caroline Jones and country superstar Tim McGraw. Traver and Elizabeth Hutchins

MAY 7, 2019

MMRF Laugh for Life: New York

A Comedy Event Celebrating Life Through Laughter

To Learn More and Purchase Tickets, visit TheMMRF.org/Laugh HEADLINER:

Dan Soder SPIRIT OF HOPE AWARD:

Suzie Binch LOCATION:

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S P O T L I G H T C O M M U N I T Y

TEAM FOR CURES: 5K WALK/RUN

In 2018 thousands of members of the myeloma community raised $3.3 million to fuel our cutting-edge research, support innovative trials, and advance new treatment options for patients. TRI-STATE

CHICAGO

PHILADELPHIA

Honorary race chair Dr. David Siegel of Hackensack Meridian Health kicked off our final race of the spring on June 10th in the MMRF’s backyard, New Canaan, Connecticut. Over 1,000 participants came out to help raise $380,000. The Spirit of Hope Award was presented to Wayne Limosani. Wayne’s mantra — “no one fights alone” — was exemplified by the support of “Wayne’s Warriors”, 60 of the Limosani’s family members and closest friends who cheered from the crowd.

The Windy City hosted our largest fall 5K Walk/Run event on September 16th, with 1,300 participants raising over $435,000. The Campbell family and Baxter Credit Union presented the Spirit of Hope Award to myeloma patient and long-time supporter, Matt Freer, and inspired participants with their passionate speeches. The MMRF was thrilled to have Dr. Andrzej Jakubowiak from University of Chicago speak and serve as our honorary race chair.

On November 10th, Dr. Edward Stadtmauer of the University of Pennsylvania addressed the crowd of 1,000 participants gathered at Fairmount Park to support the MMRF on a chilly morning. Nearly $255,000 was raised. MMRF Board Member and patient Marie Pinizzotto received the Spirit of Hope Award and spoke of the MMRF’s relentless pursuit towards a cure.

Spirit of Hope Award: Wayne Limosani

Largest Team: Let Me Run Fairfield County

Spirit of Hope Award Matt Freer

Top Fundraising: Team Better Days

Caregiver Award: Sue Malloy and her son Teddy Malloy

Top Fundraising BARNEX T

TEAM FOR CURES: 5K WALK/RUN 2019

JOIN US IN A CITY NEAR YOU! VISIT THEMMRF.ORG/5K FOR DATES. 16

Largest Team Team Tommy Caregiver Award Jessica Szramiak

Spirit of Hope Award Marie Pinizzotto Top Fundraising Team Fam

SPRING 2019

FALL 2019

South Florida San Francisco Dallas Boston Atlanta Tri-State

Chicago Twin Cities Washington, DC Charlotte New York City Philadelphia Los Angeles

Largest Team Jane’s Village Caregiver Award Larry Winters and his son Kyle Winters

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ICELAND FIRE & ICE TREK

E N D U R A N C E

This past August, 13 hikers — including five myeloma patients — tackled three days of challenging hiking through the natural wonders of Iceland. For members of the team, the combination of rugged beauty, pushing physical limits, and raising vital funds was life-changing. “Together we will find a cure to move the mountains that stand in the way of multiple myeloma patients,” said patient and climber Rich Appelbaum. The trek raised over $130,000 for the Moving Mountains for Multiple Myeloma program, bringing the program’s fundraising to nearly $2 million in just three years. Thanks to our pharma partner and sponsor Celgene, 100 percent of all funds raised will go straight to research. Visit: MovingMountainsForMultipleMyeloma.com to see where we’re going in 2019.

E V E N T S

ROAD TO VICTORIES The Road to Victories program is symbolic of the right track that every patient needs to take when diagnosed with multiple myeloma. Teams of patients, caregivers, and researchers come together on these journeys as strangers and leave as a team, united by a common bond and desire to find a cure for myeloma. In 2018, the program grew from one ride to three. This year, teams rode from London to Paris, Montana into Canada, and across the Red Rock country of Utah, raising over $220,000. We are grateful for the sponsorship of Janssen Oncology for allowing us to direct 100 percent of every dollar raised directly to life-extending research. Visit Endurance.TheMMRF.org to learn more about upcoming events.

MMRF Team for Cures The MMRF Team for Cures has crossed the finish line of its 2018 triathlon season. Our teams at IRONMAN® Lake Placid and IRONMAN® 70.3 Lake Placid together raised nearly $430,000. In 2019, the program expands to more iconic locations with the opportunity to race at IRONMAN® Lake Placid, IRONMAN® Chattanooga, IRONMAN® Florida, and the recently-announced IRONMAN® 70.3 Connecticut. Visit Endurance.TheMMRF.org to learn more about joining our teams and receiving exclusive perks.

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Kathy Giusti, multiple myeloma patient, Founder, and Chief Mission Officer of the MMRF, discusses the importance of genome sequencing, the launch of MyDRUG and its impact on the future of multiple myeloma treatments.

F O U N D E R

You have been a vocal proponent of precision medicine long before the MyDRUG trial. Why?

M M R F

Long-lasting remissions and cures can only be achieved through treatments that specifically target the distinct changes in each patient’s cancer. We had the foresight to strategically invest in the science and technology needed to understand the genetic diversity of multiple myeloma, identify its many sub-types, and begin to match patients, based on their sub-type, to the very best treatments. This is the future of cancer treatment and, with the launch of the MyDRUG clinical trial, is becoming the reality for multiple myeloma patients.

How did early discoveries lead to the MyDRUG clinical trial? The MyDRUG trial would never have come to be without earlier models that preceded it. Building the MMRF Tissue Bank was pivotal because, for the first time, it gave researchers the access to a centralized source of tissue samples needed to learn more about multiple myeloma at its most basic level. These insights led to sequencing the multiple myeloma genome in its entirety for the very first time, which provided important clues about the genetic features linked to multiple myeloma and its response to treatment. These learnings laid the foundation for the landmark MMRF CoMMpass StudySM, which fundamentally transformed our understanding of the biology of multiple myeloma. Through CoMMpass, we learned that multiple myeloma is made up of at least 12 different sub-types, each one defined by a unique combination of genetic mutations and molecular abnormalities, and requiring a unique treatment approach. CoMMpass learnings, in turn, formed the basis for the MyDRUG trial, which tests several different drugs targeting specific genetic changes and other features identified in CoMMpass.

Q&A WITH THE FOUNDER & CHIEF MISSION OFFICER 18

What does this mean for multiple myeloma patients? Through the MyDRUG trial, we’re bringing new treatments to myeloma – four to start! These treatments have changed the lives of patients with metastatic breast cancer, bladder cancer, and other devastating forms of cancer. By testing multiple different treatments, the MyDRUG trial is able to more quickly determine whether a treatment is effective and more efficiently identify individuals and small groups of patients who will reap the most benefit from the new treatment—knowledge that could eventually help many other multiple myeloma patients beyond those in the MyDRUG trial. The MyDRUG clinical trial is not only an innovatively designed clinical trial, but also an incredibly complex undertaking – one that required a trusted third party like the MMRF to bring together the six pharmaceutical companies and 17 cancer centers to work toward a common goal of precision medicine for all multiple myeloma patients.

Th eM M R F.org


accelerator

2019 CALENDAR OF EVENTS

The Magazine of the Multiple Myeloma Research Foundation | Winter 2018

SIGNATURE EVENTS May 7

Laugh for Life: New York

New York City, NY

Oct. 17

Chicago Awards Dinner

Chicago, IL

New York City, NY

IRONMAN® 70.3 CT

Middlebury, CT

June 29

Mt. Washington Trek

North Conway, NH

July 28

IRONMAN® Lake Placid

Lake Placid, NY

Sept. 17

Road to Victories

Vermont to Quebec

Sept. 29

IRONMAN® Chattanooga

Chattanooga, TN

Fall

The Journey Towards a Cure Relay

Randall’s Island, NY

Oct. 13

Chicago Marathon

Chicago, IL

Nov. 2

IRONMAN® Florida

Panama Cith Beach, FL

Nov. 3

NYC Marathon

New York City, NY

Various

Your Own Race

Event of Your Choosing

MMRF TEAM FOR CURES: 5K WALK/RUN March

South Florida 5K

Ft. Lauderdale, FL

March 31

San Francisco 5K

San Francisco, CA

April 6

Dallas 5K

Dallas, TX

April 28

Boston 5K

Boston, MA

May

Atlanta 5K

Atlanta, GA

June

Tri-State 5K

Norwalk, CT

Sept.

Chicago 5K

Chicago, IL

Sept.

Twin Cities 5K

St. Paul, MN

Oct.

Washington, DC 5K

Washington, DC

Fall

Charlotte 5K

Charlotte, NC

Oct.

New York City 5K

New York City, NY

Fall

Philadelphia 5K

Philadelphia, PA

Nov.

Los Angeles 5K

Los Angeles, CA

INDEPENDENT EVENTS Feb. 2

Mingle for Myeloma

THE MMRF ONLINE:

BOARD OF DIRECTORS Mike Mortimer Chairman Lori Tauber Marcus Vice Chairman Kathy Giusti Co-Founder & Chief Mission Officer Karen E. Andrews Co-Founder Kenneth Anderson, MD Thomas Conheeney Rodney Gilmore Paul Giusti

EXECUTIVE COMMITTEE Paul Giusti President & Chief Executive Officer Daniel Auclair, PhD Senior Vice President, Research Laura Gilman Vice President, Events Steve Labkoff Chief Data Officer

Chicago, IL

April 6

Dartmouth vs. Princeton Women’s Lacrosse

Hanover, NH

May 11

NYC Crawfish for Cancer

New York City, NY

June 3

Wells Charity Golf Classic

Washington, DC

June 4

Wells Capitol Hill Reception

Washington, DC

Aug. 1

Alexander Rich Golf

Lebanon, PA

Sept. 7

Cue’ing for Cancer

Greensboro, NC

Oct.

Wine and Dine in the D

Detroit, MI

MMRF PATIENT SUMMITS* March

Florida

TBD

April

Boston

Boston, MA

May

Toronto

Toronto, Canada

Sept.

Philadelphia

Philadelphia, PA

Oct.

Denver

Denver, CO

Nov.

San Francisco

San Francisco, CA

Dana LaForge David L. Lucchino Hugh Martin Susan Marvin Gerald McDougall William S. McKiernan David R. Parkinson, MD Marie Pinizzotto, MD Michael Reinert Rodger Riney Steven Shak, MD Meryl Zausner

Rob Miani Chief Financial Officer Steve Varley Vice President, Development Chris Williams Vice President, Business Development Anne Quinn Young, MPH Senior Vice President, Marketing & Communications

HONORARY BOARD Dusty Baker James T. Brown Bob Costas Katie Couric Cindy Crawford Ann Curry Clive J. Davis CeeLo Green Scott Hamilton Mariska Hargitay Lou Holtz Bonnie Hunt Senator Kay Bailey Hutchison Dan Jansen Hoda Kotb

Diana Krall Sugar Ray Leonard Tara Lipinski Wynton Marsalis Marlee Matlin Eric McCormack Deborah Norville Sharon Osbourne Carl Quintanilla Al Roker Mel Stottlemyre Brian Williams Pat Williams Bob Woodruff Lee Woodruff

*Subject to change. Visit themmrf.org/patient for updates.

Subscribe to Cure Magazine Today! Cure is a FREE magazine for cancer patients, survivors and caregivers: CureToday.com

The information herein is not intended to replace the services of trained health professionals (or to be a substitute for medical advice). You are advised to consult with your healthcare professional with regard to matters relating to your health and, in particular, regarding matters which may require diagnosis or medical attention. Copyright ©2018 Multiple Myeloma Research Foundation

a cce l e rat o r • Wint e r 2 0 1 8

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E V E N T S

June 2

383 Main Avenue, 5th Floor, Norwalk, CT 06851 Fax: 203-972-1259 Phone: 203-229-0464 Email: info@themmrf.org Web: TheMMRF.org

O F

NYC Half Marathon

C A L E N D A R

MMRF TEAM FOR CURES: ENDURANCE EVENTS March 17

MULTIPLE MYELOMA RESEARCH FOUNDATION


Non-Profit Org. U.S. Postage PAID Bridgeport, CT Permit No. 347

383 Main Avenue, 5th Floor Norwalk, CT 06851

+ THERE’S AN MMRF FACEBOOK GROUP FOR YOU. Find Insight, Information, Resources, and a Community of People to Help You. MMRF Facebook groups are dynamic communities of patients and myeloma experts. As a group member you’ll have a chance to ask questions, get answers, and hear the latest from the cutting edge of myeloma research. MMRF Facebook groups available to you: • MGUS/SMM

• RAF/RAS Mutations

• CDK Pathway Alterations

• Newly Diagnosed

• IDH Mutations

• t(11;14) Translocation

• Relapsed/Refractory Myeloma

• FGFR3 Alterations

Joining is Easy: Visit Facebook.com/MMRF Today!

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