Winter 2019 accelerator

Winter 2019

The Magazine of the Multiple Myeloma Research Foundation

YOU’RE A VITAL PART OF THE CURE Sharing your data to the MMRF CureCloud® helps you and all myeloma patients.

MMRF PRESENTS AT IMW

Insights presented at global myeloma meeting.

IMMUNE ATLAS

Behind the groundbreaking new initiative.

MYDRUG Q&A

With MMRF Chief Medical Officer Hearn Jay Cho.

NEW TREATMENT, NEW HOPE

XPOVIO™ adds another option for relapsed patients.

Dear MMRF Friends,

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MMRF Honored for 15th Year with Highest Rating!

The Magazine of the Multiple Myeloma Research Foundation | Winter 2019

In the time since the prior issue of accelerator, where we outlined our bold, innovative strategic plan, the MMRF has made significant progress toward bringing precision treatments and a cure to every myeloma patient. We have already reached several key milestones: IMMUNOTHERAPY: We have advanced our Immune Atlas program to create a detailed map of the immune landscape in myeloma patients— allowing us to better understand every patient’s immune system. Immune data included in the Atlas is unrivaled in its depth and quality, as we used samples from our ground-breaking CoMMpassSM Study. The results were presented at the International Myeloma Workshop (pages 4–6).

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Read about the 17 annual Myeloma Workshop th

MYELOMA INVESTMENT FUND: The Fund is designed to accelerate bringing new therapies to myeloma patients while generating a financial return by investing in dynamic biotech companies with promising science.

Our first two investments are with NexImmune and Tidal Therapeutics (page 7).

CURECLOUD: We launched the MMRF CureCloud®, which includes our direct-to-patient registry. The registry tackles one of the medical research field’s greatest challenges—the lack of available, high-quality, linked data—and is the MMRF’s newest innovative model aimed at accelerating breakthrough discoveries (pages 8–9).

A letter from the President & CEO

MMRF TEAM: To execute the MMRF’s strategic plan, we have built a world-class team of leaders. The latest addition to our executive leadership team is the renowned scientist, researcher, and clinician Hearn Jay Cho, MD, PhD as the MMRF’s Chief Medical Officer. Dr. Cho will lead our research and clinical efforts to accelerate the development of new, more precise treatments (page 12).

INTERNATIONAL MYELOMA WORKSHOP

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MMRF CURECLOUD

A new precision medicine initiative by the MMRF

®

04 INTERNATIONAL MYELOMA

WORKSHOP

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ASH 2019

My best wishes for the holidays and I look forward to continuing to share our progress.

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MMRF IMMUNE ATLAS

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MYELOMA INVESTMENT FUND

Investing in Tidal Theraputics

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MMRF CURECLOUD

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INTRODUCING XPOVIO™

Paul Giusti President and Chief Executive Officer

IMMUNE ATLAS

Learn how you can become a part of a greater whole

Each of these advances represents an enormous step forward for the entire myeloma community and we are enthusiastic about our progress.

With your continued support and participation in our research, we will build on the incredible momentum we have generated to find a cure for every myeloma patient.

With deep gratitude,

06 MMRF

®

A new way to fight multiple myeloma

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MMRC MYDRUG Q&A

15 MMRF EVENTS

Learn about the first-ever platform trial for multiple myeloma

• Chicago Awards Dinner

• Wine & Dine in the D

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MMRF TEAM FOR CURES

MMRF LEADERSHIP NEWS

• Meet our new Chief Medical Officer • A new addition to our Honorary Board 13 DONOR SPOTLIGHT 14

MMRF PATIENT RESOURCES

• MMRF Patient Navigation Center

• MMRF Patient Summits and Webinars

18 MMRF FOUNDER & CHIEF

MISSION OFFICER

19 CALENDAR OF EVENTS

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

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Insights Presented at International Myeloma Workshop

MMRF CoMMpassSM Study Presented studies using data from the MMRF CoMMpassSM Study included: • Greater understanding of the biology of high-risk disease and early relapse

Continued Progress at ASH 2019

• Novel findings about the use of genomic markers for predicting risk and response to specific therapies, including Clonal Heterogeneity of Indeterminate Potential (CHIP) • Promising new targets for drug development

MMRF Answer Fund Constantine Mitsiades, MD, PhD and his colleagues at the Dana-Farber Cancer Institute presented work based on the MMRF Answer Fund, an initiative designed to answer critical questions about myeloma. With support from the MMRF, Dr. Mitsiades used state-of-the-art genomic techniques to analyze data from CoMMpass. He and his team identified a subset of genes essential for myeloma cell survival, which may be targets for new therapies.

MMRF CureCloud® Pilot MMRF Chief Scientific Officer Daniel Auclair, PhD presented the first results from the MMRF CureCloud® pilot. CureCloud allows patients to contribute their data to a centralized hub where it will be used to drive efforts in precision medicine.

The poster describes the results from the CureCloud pilot program of data captured from 65 multiple myeloma patients.

In September, top researchers and physicians from around the world gathered in Boston for the 17th International Myeloma Workshop (IMW).

The last time IMW was held in Boston was 1997. At the time, the five-year survival rate for myeloma was only 32%.

Treatment was mostly limited to chemotherapies, which had low response rates, and there had been few treatment advances in over 30 years. The rarity of myeloma meant there was little funding and scientists understood little about the disease biology.

Smoldering Multiple Myeloma Using samples from the MMRC tissue bank, MMRF Chief Medical Officer Hearn Jay Cho, MD, PhD and his colleagues at Mount Sinai Medical Center in New York confirmed that disease progression from smoldering to active myeloma results from multiple pathways and complex interactions between tumor cells and the immune system.

We’ve come so far in 22 years. Now there are 11 FDAapproved drugs for myeloma and the five-year survival rate is above 50%. Among the research presented at this year’s IMW were 24 studies from the MMRF.

To learn more, visit TheMMRF.org/IMW2019

ASH 2019 Annual Meeting Features Work from Myeloma Researchers The American Society of Hematology (ASH) 61st Annual Meeting & Exposition was held December 7–10, 2019 in Orlando, Florida. ASH is the world’s largest professional society serving physicians and scientists around the world who work to conquer blood diseases like multiple myeloma.

This year’s ASH meeting featured 34 MMRF-supported abstracts .

Our research partners continue to push the boundaries of science to understand the biology of myeloma and bring us closer to a cure for every patient.

To learn more, visit TheMMRF.org/ASH2019

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MMRF Launches Immune Atlas

Myeloma Investment Fund Invests in Tidal Therapeutics

Earlier this year, the MMRF launched an exciting new precision medicine initiative: the Immune Atlas. We anticipate that the Immune Atlas will be the gold standard profiling platform for research and will generate the critical immune data that we will need in order to create immunotherapy treatments for all myeloma patients.

Earlier this year, the MMRF launched the Myeloma Investment Fund (MIF), a venture philanthropy fund focused on accelerating MMRF’s mission to deliver more effective and precise treatments to every patient. Our goal is to raise a total of $50 million.

“ The Immune Atlas program offers a vital approach to integrate precision medicine with the transformative field of immunotherapy. Through understanding the unique signature of a patient’s immune system we can better design the next generation of therapies.”

The MIF identifies and invests in the most promising biotechnology companies whose work is geared toward transforming myeloma treatment. As these investments generate returns, we will reinvest 100% directly back into research for new treatments.

Most recently, the MIF invested in Tidal Therapeutics. Tidal President and CEO Ulrik Nielsen talks with us about the partnership with the MMRF and how it enhances the development of more precise treatments for multiple myeloma.

— DAVID AVIGAN, M.D.

Chief, Division of Hematology and Hematologic Malignancies, Beth Israel Deaconess Medical Center

WHAT IS THE RELATIONSHIP BETWEEN TIDAL AND THE MMRF/MYELOMA INVESTMENT FUND?

Advancing immune therapy in multiple myeloma will require detailed knowledge of patient immunity and how it changes throughout the course of the disease and treatment. The Immune Atlas is designed to comprehensively gather this information. The Atlas will be a detailed map of the immune landscape in myeloma. We will integrate this immune data with genomic and patient health information to answer critical immune-related questions relating to myeloma.

The MIF invested in Tidal’s seed financing effort in June 2019. We are developing new drug candidates with the potential to help myeloma patients, so it was a natural fit. In return, the MIF has equity in Tidal and an observer seat on Tidal’s Board of Directors.

Pilot Study

Tidal has proprietary technology to modify T-cells directly in the patient’s blood, targeting myeloma and B-cell malignancies. This is like the CAR T-cell reprogramming in drugs like KYMRIAH™ and YESCARTA®, but without the need to remove the cells from the patient’s body and then reinfuse them. With our technology, the actual components needed for the reprogramming of the T-cells would be administered by infusion. Tidal is planning to use this technology to develop novel CAR T therapies suited for the treatment of myeloma.

WHAT IS TIDAL CURRENTLY WORKING ON THAT IS RELEVANT TO THE MYELOMA SPACE?

To begin the creation of the Immune Atlas, the MMRF has launched a pilot study utilizing samples from the CoMMpassSM Study and working with leading academic center experts in immunology and bioanalysis. Our partners at the Beth Israel Deaconess Medical Center, Emory University, Mayo Clinic, Mount Sinai School of Medicine, and Washington University in St. Louis are evaluating methods and analytical approaches for gathering the immune information we need. Their efforts will determine the best way to aggregate and analyze the immune data we need to best serve myeloma patients.

Ulrik Nielsen, Tidal President & CEO

WHAT WILL THE INVESTMENT FROM MIF ALLOW TIDAL TO ACCOMPLISH THAT WAS NOT POSSIBLE BEFORE?

The Immune Atlas is a critical part of the MMRF’s three-year strategic plan to generate robust immune data and advance precision immuno-oncology efforts.

MMRF’s capabilities and expertise around myeloma and the MIF investment will help to ensure Tidal is able to succeed in bringing our technology into the clinic.

Myeloma patients will have access to this drug in clinical trials. We hope that this ultimately leads to market approval and better outcomes for myeloma patients.

“We are so fortunate to have these five best-in-class institutions as members of our Multiple Myeloma Research Consortium (MMRC), who can bring cuttingedge scientific analysis to bear on the most pressing needs of our patients,” said the MMRF Chief Scientific Officer Daniel Auclair, PhD. “Once this immune profiling platform is validated, it can be rolled out to bring the promise of precision immunotherapy to the entire myeloma community.”

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To learn more about the Myeloma Investment Fund, visit MyelomaInvestmentFund.org

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DIRECT-TO-PATIENT REGISTRY PUTS POWER IN THE HANDS OF PATIENTS Now all multiple myeloma patients have the opportunity to make crucial data contributions that will accelerate the delivery of precision medicine therapies for myeloma.

In October, the MMRF announced the launch of the Directto-Patient (DTP) Registry, a safe and secure way for patients to contribute their clinical and genomic data to the MMRF CureCloud®, a comprehensive data repository.

Research has shown that more than 90% of myeloma patients say they are willing to share information about their disease to advance treatments. Prior to now there wasn’t an easy way for them to do that. The DTP Registry will make data sharing easy and will ultimately help patients and their physicians make more informed treatment decisions.

In the future, clinicians, researchers, and patients will have access to the data to advance precision medicine approaches for every patient. The CureCloud will also contain existing MMRF data, such as CoMMpassSM, the largest genomic dataset of any cancer.

How Can I Participate in the Registry?

• You fill out an online consent form, allowing the MMRF to secure your electronic health records (EHR).

This effort is the latest model from the MMRF to speed the delivery of new, more precise treatments for patients. Data is critical to understanding and curing myeloma. We are committed to building out a data set that will lead to a cure for every patient.

• A phlebotomist will collect a blood sample from you at a convenient time and location—even coming to your home.

• Samples will be sent to a central laboratory for DNA sequencing and will be stored within the MMRF Tissue Bank for future immune profiling. All identifying information will be removed.

“Data is our strongest weapon against cancer and disease,” says Steve Labkoff, MD, the MMRF Chief Data Officer. “We are thankful to our amazing partners, donors, and the patients who participated in the pilot program, who have enabled us to launch this effort which will undoubtedly accelerate our ability to find a cure for every patient.”

• After the samples and medical records are processed and analyzed, the information will be uploaded to the MMRF CureCloud for use by researchers.

• In 2020, a patient’s DNA sequencing results will be provided to both the patient and their doctor.

For more information, visit TheMMRF.org/CureCloud

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Q. WHAT IS MyDRUG? A. MyDRUG is the first genomically-guided precision medicine trial in multiple myeloma. First we identify specific mutations in myeloma cells. Then we match drugs targeting those mutations. We can do this in about 40% of cases. The goal is to test if this approach results in more effective treatments.

Patients who don’t match a specific mutation/drug will receive treatment with a combination of FDA-approved or experimental medications that are not limited to specific mutations. These are already approved for use in other cancers, but as yet untested in myeloma.

Approval of XPOVIO™ Adds Another Weapon in the Arsenal Against Myeloma In July, the U.S. Food and Drug Administration (FDA) granted accelerated approval to XPOVIO™ (selinexor) for use in patients with myeloma. The drug may be used along with dexamethasone (a steroid) for adult patients with relapsed refractory multiple myeloma (RRMM) who have received at least four prior therapies and whose disease is resistant to several other forms of treatment. This new treatment option for myeloma comes as a direct result of a $1 million award from the MMRF to pharmaceutical company Karyopharm. This award ensured prioritization of myeloma as an indication and supported the early clinical trials.

How Does It Work?

XPOVIO is the first of a new kind of drug called nuclear export inhibitors. It disrupts a protein in myeloma cells and ultimately leads to myeloma cell death.

Who Can Take XPOVIO? XPOVIO is approved for use in patients who have relapsed after treatment with at least four other therapies, including drugs like REVLIMID®, KYPROLIS®, NINLARO®, DARZALEX®, and VELCADE®, and patients who have relapsed after stem cell treatment and high-dose chemotherapy.

Q. WHY IS THE MMRF UNIQUELY POSITIONED TO RUN THIS TRIAL? A. In short, we can bring all the right people together. First and foremost are patients. They know we’ll help them find the best treatment options.

Next are physicians. We have a network of leading academic medical centers in the Multiple Myeloma Research Consortium (MMRC). These doctors provide the highest level of care for patients enrolled in MyDRUG.

“ With the accelerated approval of XPOVIO by the FDA, patients with heavily pretreated multiple myeloma will now have a new therapeutic option.

Discovering, developing and securing FDA approval for XPOVIO required the dedication of many people, including the patients, caregivers and physicians involved in our clinical trials, along with our team at Karyopharm. We are also so grateful to the MMRF for its partnership and funding to help accelerate the earliest clinical trial.”

hird, our pharmaceutical partners collaborate with T us to provide these specific medications.

& Q A ™

Are There Side Effects?

Patients taking XPOVIO can experience side effects, including: • Low white blood • I ntestinal issues cell count • Infections • Low platelet count

• Low blood • Low red blood cell count sodium levels

Q. WHO CAN PARTICIPATE IN MyDRUG? A. Patients who have high-risk multiple myeloma and have previously had between one and three lines of therapy.

Q. WHY IS MyDRUG IMPORTANT? A. MyDrug is critically important to determine if precision medicine approaches such as this improve results and lead to cures. We need to learn how to match up all the right medications with the right patients.

Q. HOW CAN I PARTICIPATE? A. Interested patients should first speak with their treating physician. Patients will be pre-screened to see if they fit the trial. If so: • You will receive counseling about the trial, have lab tests, and a bone marrow biopsy.

• Tumor cells from the bone marrow will be extracted and sequenced to identify specific mutations.

Sharon Shacham, PhD, MBA Founder, President and Chief Scientific Officer of Karyopharm

MMRF Chief Medical Officer, Hearn Jay Cho, MD, PhD answers some questions about the MMRC MyDRUG,™ the first-ever platform trial in multiple myeloma.

Doctors will monitor patients closely for the first several months of treatment in order to manage these effects. Learn more at TheMMRF.org/XPOVIO

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And finally, we have the researchers who can identify the cellular mutations, study how they respond to treatments, and understand how the treatments work or don’t work.

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• Treatment will be started and medication will be assigned.

To learn more about joining the MyDRUG clinical trial, contact a nurse navigator at the MMRF Patient Navigation Center at 888-841-6673.

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Donor Spotlight: MMRF Leadership News:

Kathy and Bruce Elsey

Dr. Cho Joins the MMRF Executive Leadership Team Earlier this fall, Hearn Jay Cho, MD, PhD joined the MMRF as Chief Medical Officer (CMO). In this role, 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.

Dr. Cho is also associate professor of medicine at the Icahn School of Medicine at Mt. Sinai Hospital and attending physician with the Multiple Myeloma Service at the Mt. Sinai Tisch Cancer Institute. He will continue in these positions as well as with his lab work at Mt. Sinai, focused on developing novel therapies for multiple myeloma.

Hearn Jay Cho, MD, PhD, Chief Medical Officer

“It is a great honor and privilege to join the MMRF,” said Dr. Cho. “The MMRF has been instrumental in the FDA approval of new treatments that have revolutionized the care of multiple myeloma.

We will keep the MMRF at the forefront of clinical and translational research, expanding our footprint in data and immunotherapy in our relentless pursuit of a cure for every patient.”

When Kathy Elsey was diagnosed with multiple myeloma in 2007, there was no doubt for her or her husband, Dr. Bruce Elsey, DVM, that she would fight it with everything she had. She pursued a stem cell transplant and chemotherapy and was on her way to remission.

Sage Steele Joins the MMRF Honorary Board

“We just decided that we needed to do something to give back to the medical community that helped me so much,” said Kathy. “We asked my oncologist what he would recommend.

One of the organizations he mentioned was the MMRF.”

Sage Steele, ESPN’s SportsCenter anchor recently joined the MMRF Honorary Board. Steele has a close connection to multiple myeloma as her father is a multiple myeloma patient. Steele was also a special guest speaker at the annual MMRF Chicago Awards Dinner.

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The Elseys were no strangers to making a difference. As the founders of Dr. Elsey’s, a successful cat care product company, doing the right thing and giving back are at the core

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of their family values. As new members of the myeloma community, they threw themselves in to supporting the MMRF’s efforts and shortly after Kathy’s diagnosis, Dr. Elsey’s Fund to Cure Cancer was born.

Since 2009, Dr. Elsey’s Fund has contributed more than $12 million to the MMRF’s efforts to accelerate a cure. “To do that, it is certainly critical that researchers continue to share information between themselves.

I think it’s wonderful that the MMRF has been instrumental in getting that to happen,” said Bruce. “Because I think it’s a group effort to cure cancer and if we don’t get people operating in unison, then we’re never going to find a cure.”

The Elseys continue to support the MMRF with their latest campaign, #CatsAgainstCancer.

They have offered both a coupon for $3 off along with a pledge to donate $3 from each coupon used to the MMRF. Visit DrElseys.com/Save3 to learn more and get involved.

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MEET THE NURSE NAVIGATORS

MMRF Patient Resources

MMRF PATIENT NAVIGATION CENTER Our Patient Navigation Center (PNC) is a resource center staffed with three full-time, specially trained oncology/ hematology nurses who provide a concierge-type service to help patients navigate their myeloma journey. The PNC provides disease and treatment options, clinical trial information, and more.

Contact the Patient Navigation Center: Monday–Friday: 9am–7pm et

RN, BSN, OCN

Nicole is an oncology and palliative care specialist. She’s an expert in all chemotherapy regimens and can offer advice on both holistic and pharmaceutical management of side effects.

MMRF Chicago Awards Dinner October 17, 2019 Bonnie Hunt welcomed more than 400 guests to our sold-out event. Guest speaker and ESPN anchor, Sage Steele, spoke personally about her father’s leadership, myeloma diagnosis, and the importance of the MMRF for all patients.

ERIN MENSCHING Erin has been an oncology nurse for eight years. Her passion is educating patients and caregivers and advocating for them to get the best care possible.

We were honored and grateful to have the esteemed General Colin L. Powell (Ret.) as our keynote speaker. He took the stage with MMRF Founder and Chief Mission Officer, Kathy Giusti for a fireside chat discussing family, the importance of leadership, and the need for innovation in cancer treatment.

SARAH COULTER

The 2019 Spirit of Hope Award was presented to John Blackburn and Connie Lindsey, who exemplify the true meaning of hope through advocacy and dedication while raising critically needed funds that support research.

RN, BSN, BA, OCN

Phone: 1-888-841-MMRF (6673)

RN, OCN

Email: PatientNavigator@TheMMRF.org

Sarah has been a registered nurse for the past five years.

She started her career at Yale New Haven health and specializes in hematology-oncology and bone marrow transplant.

Clinical Trials: TheMMRF.org/TrialFinder

MMRF Events

NICOLE SANDILANDS

The generosity of our guests and donors raised more than $950,000 at the event.

To learn more about our events, visit TheMMRF.org/Signature

Wine & Dine in the D September 5, 2019

MMRF Webinars & Patient Summits Our webinars and patient summits educate and inform myeloma patients and caregivers while also providing an opportunity to meet renowned myeloma medical experts and MMRF staff.

This year, we hosted 11 webinars with topics ranging from innovative clinical trials to emerging immunotherapy treatments to new drug approvals. We also hosted a total of six summits in Tampa, Boston, Denver, San Francisco, Philadelphia, and Toronto.

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To view all past webinars, patient summits, and register for upcoming 2020 events, visit TheMMRF.org/PatientED

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Longtime MMRF supporters, Sharon and Sid Moss hosted “Wine & Dine in the D” for the ninth year in a row. The event raised over $150,000 to support critical myeloma research and featured donated food and beverages from 22 local Detroit restaurants. MMRF Chief Scientific Officer, Daniel Auclair, along with five myeloma doctors, hosted a panel discussion and Q&A with a packed room of patients, patient family members, and supporters. The event will return for the 10th year on Thursday, October 8, 2020.

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MMRF Team for Cures

The MMRF Team for Cures program brings together the myeloma community and supporters to raise funds for research and awareness. Take part in our 5K Walk/ Run programs and/or one of our Endurance Events.

5K Walk/Run For Cures Our 5K walk/run series is both a friend raiser and a fundraiser, growing community support for the MMRF and raising vital funds for myeloma research. This fall, participants helped raise nearly $2 million to support our work.

Join us in a city near you! Visit TheMMRF.org/5K for dates.

CHICAGO | SEPTEMBER 15

PHILADELPHIA | SEPTEMBER 29

WASHINGTON, DC | OCTOBER 6

More than 1,250 runners and walkers gathered in Montrose Harbor in midSeptember at an event that honored the strength and spirit of dear friends, volunteers, runners, and walkers of all ages. All in, the teams raised over $445,000.

On a beautiful Sunday morning, the participants for the Philly 5K gathered in a brand-new venue for its 15th annual race: The Philadelphia Zoo. 1,300 participants raised more than $275,000 and were treated to a unique course that wound its way through the zoo’s exhibits.

National Harbor created a beautiful backdrop for the DC 5K Walk/Run. 1,200 walkers and runners helped raise over $275,000 to fund research that will save lives.

Honorary Race Chair: Dr. Jagoda Jasielec, University of Chicago Spirit of Hope Recipient: Howard Barnett (Team BARNEXT)

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Honorary Race Chair: Dr. Edward Stadtmauer, UPenn, Abramson Cancer Center

Honorary Race Chair: Dr. Dipti Patel-Donnelly, Virginia Cancer Specialists Spirit of Hope Recipient: Katy Young (Katy’s Warriors!)

Riding for a Cure On September 17–22, we had an incredible team of 30 cyclists tackle the 300 miles from Burlington, VT to Lac Magog, Quebec. Every member of the team had a personal connection to multiple myeloma—eight riders were also patients. The team also included Dr. Jeffrey Wolf, Director of the Myeloma Program at the University of California, San Francisco and Megan Macejko, RN, an oncology nurse from Ohio.

As they rode through small towns and conquered rolling hills to spread awareness, they formed a bond that will serve as a support group for years to come.

Proudly sponsored by Janssen Oncology, 100% of the $430,000 raised goes directly to research.

Spirit of Hope Recipient: David Schor (Team Multiple Myellamas)

Interested in riding with us in 2020? Email TeamManager@TheMMRF.org for more information.

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AT THE MMRF, OUR GOAL IS SIMPLE— TO CURE EVERY PATIENT. Since our inception, our work has been guided by disciplined strategic planning. We thoroughly scrutinize the landscape to accelerate the science, advance the technology, and identify opportunities for more precise treatments for the patients we serve.

Laugh For Life: New York

New York, NY

October 13

Chicago Awards Dinner

Chicago, IL

MMRF TEAM FOR CURES: ENDURANCE EVENTS

The Magazine of the Multiple Myeloma Research Foundation | Winter 2019

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

New York, NY

April 4

Rim to Rim Trek

Grand Canyon, AZ

April 20

Boston Marathon

Boston, MA

April 26

London Marathon

London, England

May 12

Empire State Building Run Up

New York, NY

BOARD OF DIRECTORS

June 22

Alaska Trek

Homer, Alaska

• Generate and analyze data to identify new targets and democratize care

June 28

Discover Hudson Valley Ride

Poughkeepsie, NY

July 10

Mt. Washington Trek

Jackson, New Hampshire

We know that multiple myeloma is a highly heterogeneous disease, which means it differs from patient to patient. To understand the disease at its deepest biological level, the MMRF built the largest genomics data set with our groundbreaking CoMMpassSM Study.

July 25

Greenland Trek

Nasarsuaq, Greenland

August 2

Road to Victories

Portland, OR

September 11

Mt. Kilimanjaro Trek

Tanzania, Africa

Mike Mortimer Chairman Lori Tauber Marcuss Vice Chairman Kenneth Anderson, MD Karen E. Andrews Thomas Conheeney Rodney Gilmore Kathy Giusti Paul Giusti Dana LaForge David L. Lucchino

• Attract new companies through our venture philanthropy fund

So Far, CoMMpass Has Helped us to Identify: • At least eight different subtypes of multiple myeloma, and we need to understand the right treatments in the right sequence for each subtype.

• Patients who are likely to have high-risk, more aggressive disease.

We know that two of those eight subtypes have a higher risk of early disease progression.

• New, actionable targets, some of which are already available for other cancers. This led us to create MyDRUG™, the first platform clinical trial for multiple myeloma patients, where they are treated with a targeted treatment according to their genomic profile.

None of this would have been possible without the more than 1,100 patients who are contributing their data to this landmark effort.

And, now we are expanding our efforts and building on CoMMpass to answer even more questions. From: “Do I need to have a stem cell transplant early in my care?” To: “Which treatment or trial should I be on when I no longer respond to most available treatments?”

To answer these critically important questions rapidly and reliably, we need 5,000 of you to share your data. Today, most patient data used for research comes from cancer centers. Unfortunately, these datasets are often limited to clinical data or the data are scattered across the cancer research community and, all too often, remain unshared. You have the ability to change this.

This fall, we launched our direct-to-patient effort, which allows patients to share genomic, immune, and other health data directly to the MMRF CureCloud®, where it is made available to the entire myeloma community to answer these and many other urgent patient questions. (Learn more on pages 8–9.)

There has never been a more exciting time in myeloma research. And, now every patient can play a role in accelerating progress for the entire community.

Through this groundbreaking effort, precision treatment and a cure for every patient are within our reach.

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May 6

New York City Half Marathon

• Build rational approaches to precision immunotherapy

Our Founder and Chief Mission Officer

SIGNATURE EVENTS

March 15

OUR LATEST PLAN HAS THREE PILLARS:

A Word from Kathy Giusti

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2020 Calendar of Events

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September 27

Berlin Marathon

Berlin, Germany

October 1

Machu Picchu Trek

Machu Picchu, Peru

October 3

The Journey

Randall’s Island, NY

October 11

Chicago Marathon

Chicago, IL

New York City Marathon

New York, NY

November 1

MMRF TEAM FOR CURES: 5K WALK/RUN

March

South Florida 5K

Ft. Lauderdale, FL

March

San Francisco 5K

San Francisco, CA

April

Dallas 5K

Dallas, TX

April

Boston 5K

Boston, MA

May

Atlanta 5K

Atlanta, GA

May

Cincinnati 5K

Cincinnati, OH

May/June

Houston 5K

Houston, TX

June

Tri State 5K

Norwalk, CT

September

Chicago 5K

Chicago, IL

September

Eastern Iowa 5K

Iowa City, IA

September

Philadelphia 5K

Philadelphia, PA

September

Twin Cities 5K

St. Paul, MN

October

Charlotte 5K

Charlotte, NC

October

New York City 5K

New York, NY

October

Washington, DC 5K

Washington, DC

November

Los Angeles 5K

Los Angeles, CA

Scottsdale 5K

Scottsdale, AZ

November

INDEPENDENT EVENTS:

March 7

Chicago Mingle For Myeloma

Chicago, IL

April 4

Bar-B-Cure For Cancer

Greensboro, NC

October 8

Wine and Dine in the D

Detroit, MI

THE MMRF ONLINE:

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

EXECUTIVE LEADERSHIP TEAM Kathy Giusti Founder and Chief Mission Officer MMRF and MMRC Paul Giusti President and Chief Executive Officer Michael Andreini Chief Operating Officer Daniel Auclair, PhD. Chief Scientific Officer Hearn Jay Cho, MD, PhD. Chief Medical Officer Steven Labkoff, MD, FACP, FACMI Chief Data Officer Rob Miani Chief Financial Officer

Anne Quinn Young, MPH Chief Marketing and Development Officer Karen Dietz, JD, MBA General Counsel and Secretary Laura Gilman Vice President, Events Greg Rubenstein Vice President, Marketing & Communications Patrick Simms Vice President, Clinical Operations Steve Varley Vice President, Development Christopher Williams Vice President, Business Development

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 Sage Steele Brian Williams Pat Williams Bob Woodruff Lee Woodruff

Events are subject to change, for more information visit: TheMMRF.org/Events.

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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 ©2019 Multiple Myeloma Research Foundation

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PAY TRIBUTE

THANK YOU!

To the 24,000+ people who have raised nearly $1 million by turning their birthdays into MMRF fundraisers on Facebook, we extend our heartfelt thanks.

Special occasions such as graduations, weddings, and other milestones are perfect opportunities to help the MMRF further research and accelerate new treatments while honoring a loved one.

Get started today at Tribute.TheMMRF.org