THE RIPPLE EFFECT OF LYMPHOMA RESEARCH

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A Publication for Friends of the Lymphoma Research FoundationTHE RIPPLE EFFECTOF LYMPHOMARESEARCHClinician and researcher, Dr. Michael Williamssees lymphoma research as having a rippleeffect. Lymphoma researchers have a muchlarger impact on the lives of thosetouched by this disease.page 12ADDRESSING CANCERSURVIVORSHIPpage 8UPDATES FROM 2020AMERICAN SOCIETY OFHEMATOLOGY ANNUALMEETINGpage 16Winter 2021

PULSEA Publication for Friends of theLymphoma Research FoundationPulse is a publication of the Lymphoma Research Foundation, providingthe latest updates on the Foundation and its focus on lymphoma research,awareness and education.The Lymphoma Research Foundation is devoted to funding innovative lymphomaresearch and serving the lymphoma community through a comprehensive seriesof education programs, outreach initiatives and patient services.FOUNDATION LEADERSHIPSteven EichbergChair, Board of DirectorsEditorKinya HarteAndrew D. Zelenetz, MD, PhDChair, Scientific Advisory BoardAssociate EditorNichole MusumeciMeghan E. GutierrezChief Executive OfficerEditorial AssistantPenelope AndujarEditorial BoardJesse BrownVictor GonzalezKyle HainesSarah QuinlanRebecca RauschWhitney SteenCONTACT USNational HeadquartersWall Street Plaza88 Pine Street, Suite 2400New York, NY 10005Tel: 212 349 2910lymphoma.orgLRF Helpline800 500 9976helpline@lymphoma.orgContact the EditorFor more information or toshare comments, please emaileditor@lymphoma.org.Michelle SteinerWilliam WhitePulse 2021 Lymphoma Research FoundationPulse 2020 Lymphoma Research FoundationThe Lymphoma Research Foundation (LRF)understands that a diagnosis of lymphoma maybring about many different emotions and thateveryone’s journey is personal.LRF’s Living with Lymphoma podcast is here to helpthe lymphoma community better understand how tocope with the unique circumstances that a diagnosisof lymphoma presents.Listen in as experts and patients discusspsychosocial topics related to a diagnosis withlymphoma and other forms of cancer. Join VictorGonzalez and Izumi Nakano from the Foundation’sHelpline as they explore various survivorship topics.Visit lymphoma.org/podcastto listen and subscribe to upcoming episodes.PULSE WINTER EDITION 2021

TABLE OFCONTENTS[ FEATURES ]The Ripple Effect of Lymphoma ResearchLRF grantee and Scientific Advisory Board (SAB) memberDr. Michael Williams sees lymphoma research as having a rippleeffect. Like ripples expanding across the water when an object isdropped into it, being a lymphoma researcher has a much largerimpact on the lives of those touched by this disease.Updates from 2020 American Society of HematologyAnnual Meeting1216LRF returned to the American Society of Hematology (ASH)Annual Meeting and Exposition, with nearly 70 LRF-affiliatedscientists presenting abstracts at the conference.Best ShotWhen Chris Gorelik received news that his central nervoussystem lymphoma would leave him with months to live, he soughta second opinion and took a chance on a new treatment protocol —to give him a fighting chance to see his children grow up.[ DEPARTMENTS ]Community ImpactPhilanthropy in ActionAdvocacy MattersAddressing Cancer SurvivorshipFrom the FieldWhere Are They Now?Living with LymphomaCOVID-19 Vaccines and the Lymphoma CommunityPatient Perspectives286812241

More than2 MILLION PEOPLEserved through educationprograms, digital resourcesand support services2020IMPACTREPORTWe give thanks for our community— donors, volunteers, friends andadvocates — who come togetherto help us achieve a world withoutlymphoma. Through the work of theLymphoma Research Foundation(LRF), you touched the lives ofmore than 2 million people in 2020.Together, we will continue to make animpact and support all those touchedby this disease. Thank you.Provided more than70 PATIENT ANDPROFESSIONALPROGRAMSMore than10,000 PATIENTS,SURVIVORS ANDCAREGIVERSserved through the LRF Helpline15 NEW GRANTSawarded and more than 40,000research hours funded — enablingearly-career scientists to maintaina research focus on lymphomaPeople in all50 STATES(including the District ofColumbia) and more than50 COUNTRIESaccessed LRF digital resources

25 YEARS OF INNOVATION AND PROGRESSIn 2020 LRF celebrated 25 years of innovation and progress! Throughlymphoma-specific research grants and consortia, LRF seeks tounderstand the nearly 100 subtypes of lymphoma and support thedevelopment of new treatments. As a result, LRF-supported researchershave been involved in many of the most significant lymphomabreakthroughs witnessed in the past quarter-century.MULTIMILLION DOLLARRESEARCH INVESTMENTEstablished in 2020 through the generosity of the Peykoff Family and NiagaraCares, the 10 million Initiative is poised to transform the follicular lymphomatreatment landscape for tens of thousands of patients by harnessing LRF’sunique resources, convening the world’s experts in follicular lymphomaresearch and patient care, and driving direct investment in clinical research.LRF COVID-19 CRISIS RESPONSEIn the blink of an eye, COVID-19 swept the world and disrupted the way weinteract, communicate, conduct business and live. As the pandemic beganto unfold, LRF quickly responded by coming up with new and creative waysto meet the needs of the lymphoma community.FINDINGCURESSTARTSHERERead more about LRF’simpact in the 2020 Annual Reportat lymphoma.org/financials.2020ANNUAL REPORT

COVID-19 UPDATES &RESOURCESThe Lymphoma Research Foundation (LRF) COVID-19 programming and resourcesprovides members of the lymphoma community with the latest information on COVID-19,financial assistance and resources for emotional support.COVID-19 WEBINAR SERIESLRF’s free webinars are hour-long interactive programs led by leadinglymphoma experts. Watch/listen to the following archive programs: COVID-19: What the Lymphoma Community Needs to Know COVID-19: Managing Concerns for Lymphoma Patients COVID-19: Addressing Telemedicine Now and in the Future Updates on COVID-19 from the 2020 American Society ofHematology MeetingCOVID-19 FACT SHEETSLRF’s free fact sheets covering the topics below are available for downloadat lymphoma.org/publications: Understanding COVID-19 Understanding the Immune System and Lymphoma How to Prepare for and Cope with a Pandemic or Crisis Situation Resources for COVID-19 Financial Assistance and Emotional SupportFINANCIAL ASSISTANCELRF’s Patient Aid Program provides limited financial assistancefor people with lymphoma/chronic lymphocytic leukemia (CLL) inactive treatment to help with costs including food, transportation,lodging or housing, utilities, child care and/or devices (e.g., canes,wheelchairs, ramps).Access these resources, articles, FAQs and more in LRF’s COVID-19 Learning Center at lymphoma.org/covid19.CONTACT THE LRF HELPLINE800 500 9976 helpline@lymphoma

FROM THECEOThis past year was challenging at best, but made one thing veryclear: our work together can transform the landscape of lymphomaresearch and provide critical support to patients and their loved oneswhen they need it most.Because of generous supporters like you, we continue to fundthe most promising lymphoma researchers and advance ourunderstanding of the more than 100 different lymphoma subtypes.Finding cures truly starts here.We are excited to start the new year with a new Pulse issue that highlights all the incredible strides made inlymphoma research and how supporters like you make them possible. We profile one of the world’s leadinglymphoma clinical researchers, Michael Williams, MD, ScM, of University of Virginia School of Medicine. Dr.Williams has led the way in furthering our understanding of novel targeted therapies — like oral anti-cancertherapy — and mantle cell lymphoma (MCL), outlining challenges and areas of future study to improve patientoutcomes. Dr. Williams’s and other leading lymphoma researchers’ contributions inform our MCL patienteducation programming and resources, and have led us to develop the first-ever resources focused on oraltherapies in the treatment of lymphoma and chronic lymphocytic leukemia (CLL).This issue also features two topics impacting our community: cancer survivorship and managing stress duringtreatment and a pandemic. We offer numerous resources to patients and their caregivers to address thesecritical topics highlighted in these important pieces.We also share updates from the most extensive global scientific conference for lymphoma research andclinicians, the American Society of Hematology Annual Meeting & Exposition. Lymphoma ResearchFoundation (LRF) grantees and scientific advisors, supported by LRF funding, presented pivotal data that willinform the development of new therapies across the spectrum of lymphoma subtypes. Many of these studieswill be highlighted during LRF patient education programs throughout 2021.As we look towards a new year of innovation and progress, we will continue to invest in the best and brightestresearchers. We will deepen our understanding of lymphoma. And we will continue to support the thousandsof people affected by this blood cancer. Thank you for supporting this vital work.Sincerely,Meghan GutierrezChief Executive Officer5

[ COMMUNITY IMPACT ]PHILANTHROPYIN ACTIONWALK ON! ARIZONASWIRL: AMERICA, EPISODE TWOOn November 8, 2020, hundreds joinedthe Lymphoma Research Foundation (LRF)for Team LRF Walk On! Arizona live on Zoom.On November 14, 2020, LRF hosted itssecond episode of Swirl: America, An At-HomeTasting Event.The pandemic did not stop Arizona supporters fromgathering around their computers, televisions, phones andtablets to rally for the lymphoma community. Walk On!Arizona was hosted by Nick Ciletti, anchor at ABC‑15 inPhoenix, and featured stories from lymphoma survivorsand spotlights on Arizona fundraising teams. GrandMarshal and LRF Scientific Advisory Board member LisaRimsza, MD of Mayo Clinic, Arizona, shared informationabout the importance of lymphoma awareness, fundraisingand research. Together, the Arizona community raisedmore than 45,000 to support the LRF mission.LRF’s new online tasting series brings the most covetednew wine and cocktail trends to the comfort of your home.The program featured an exciting tasting of three winesfrom Barbieri Wine Company. Barbieri produces worldclass wines in Santa Barbara County, California, and isowned by husband-and-wife duo Erin Kempe & PaoloBarbieri. Barbieri, a Master Sommelier, led participantsthrough a personalized wine tasting, while Kempe walkedviewers through different food pairings to complementthe tasting. The event raised over 50,000 to supportLRF’s mission. Thank you to our Swirl: America HostCommittee and co-chairs AJ and Michelle Manas as wellas Series Sponsors AbbVie and Karyopharm Therapeuticsfor supporting the program. To learn more about LRF’sin‑person and virtual ticketed fundraising events, visitwww.lymphoma.org/ticketedevents.PULSE WINTER EDITION 2021

THE NIGHTMARE BEFORE CHRISTMASBENEFIT CONCERTOn Halloween night, thousands joined LRFand The Actors Fund to watch Broadway’s mosttalented artists fill their screens with an eveningof music and storytelling.Tony award-winning actor James Monroe Iglehart andfriends performed songs from Tim Burton’s The NightmareBefore Christmas. The spook-takular event raised 36,000in support of The Actors Fund and vital LRF supportservices, resources and research programs.THE GREAT BAKEBakers from across the country are joiningLRF’s new fundraising initiative.The Great Bake is a unique fundraising event that invitesbakers to create their own virtual bake sale. Bakers madetheir most delicious desserts to sell to friends, family andneighbors. Thirty participants from around the countryhave joined and raised 10,000 (and counting!). There’sstill time to join in on the fun! Visit lymphoma.org/greatbake to learn more about the Great Bake and toregister.SHOW YOUR LOVE FOR LYMPHOMAPATIENTS AND CAREGIVERSThis February, support LRF’s Patient Aid Program.Receiving a lymphoma diagnosis can be overwhelming, and thefinancial burden associated with treatment can be devastating.Many lymphoma patients must, unfortunately, choose betweenpaying for living expenses or potentially life-saving treatment.LRF’s Patient Aid Program seeks to help patients in need by assistingthem in covering out-of-pocket expenses associated with their care.Show your love for lymphoma patients by donating to LRF’s Patient AidProgram. Visit lymphoma.org/showlove to learn more.7

[ ADVOCACY MATTERS ]ADDRESSINGCANCERSURVIVORSHIPA cancer survivor is defined as anyone living with a history of cancer — from themoment of diagnosis through the remainder of life. Current data shows that 87 percentof people with Hodgkin lymphoma (HL) and over 72 percent of people with non-Hodgkinlymphoma (NHL) are still alive five years after their diagnosis. Better diagnostic toolsand more effective treatments play a critical part in improved survival rates; however,the challenge now facing many survivors is how to achieve long-term quality of life aftertreatment has ended.Emily Tonorezos, MD, MPH, Director of the Office of Cancer Survivorship at theNational Cancer Institute (NCI), in the Division of Cancer Control& Population Sciences, shares what she and the agency are doing to raise awarenessof and address issues that cancer survivors may face, as well as future directions incancer survivorship research.PULSE WINTER EDITION 2021

EMILY TONOREZOS, MD, MPHDirector of the Office of Cancer Survivorship,National Cancer Institute (NCI)Can you share how the NCI Office of CancerSurvivorship started?It is actually the cancer survivorship community thathelped launch the Office of Cancer Survivorship andhas continued to inspire hundreds of others to workin the field. Twenty-five years ago, Ellen Stovall of theNational Coalition for Cancer Survivorship — herself athree-time cancer survivor, including lymphoma — actingon behalf of the broader cancer survivorship advocacycommunity, presented a report to the NCI director atthe time, Dr. Richard Klausner. That report highlightedrecommendations by several dozen cancer survivors andtheir family members, healthcare providers, researchersand advocates to advance the science and care necessaryto better understand and meet the needs of the growingnumber of people living long-term after a cancerdiagnosis. It was in response to that report that Dr.Klausner established the Office of Cancer Survivorship(OCS) to support and direct research designed to improvethe length and quality of life of individuals diagnosedwith cancer.What are your responsibilities as Director ofthe Office of Cancer Survivorship?The Director of the Office of Cancer Survivorship’s rolehas evolved greatly, as cancer treatment and what weknow about how cancer affects the body have evolved. Asthe director, I try to emphasize the definition of a cancersurvivor, in that it starts at the time of diagnosis andcontinues through the rest of one’s life. This definitionlays the foundation of all the work we do. We alsorecognize the extremely important role that caregiversplay in cancer survivorship.The most recent iteration of the definition was putforward by Deborah K. Mayer, PhD, RN, AOCN,FAAN, who served as interim director before I joinedthe NCI. She specifically called out this populationof people living with cancer to emphasize that“cancer survivor” applies to anyone who has had acancer diagnosis, whether or not treatment has beencompleted or is expected to be completed. Underscoringthat definition, as director, I lead NCI’s efforts tosupport research on behalf of cancer survivors andtheir care, health longevity and wellbeing. My workincludes fostering partnerships with other agencies,organizations, the advocacy community and otherleaders in the field to identify research gaps as ourknowledge of cancer survivorship grows and the needsof the field change.What are some key initiatives or programs youare addressing?There is a growing population of people, including peoplewith various types of lymphoma, who may never entera phase of post-treatment or are expected to live withcancer and be on and off treatment for the balance oftheir lives. Research is needed to understand the patientexperience fully, including the challenges patients facedespite therapy and supportive care improvements.For every advance made in cancer treatment andunderstanding cancer, the cancer survivor populationcontinues to grow, and we continue to learn. About ayear ago, Dr. Mayer brought together investigators andadvocates outside the National Institutes of Health todiscuss critical gaps in cancer survivorship research andcare, including financial hardship, training and educationfor providers, care coordination and health promotion. Afollow-up webinar sought additional input from the widersurvivorship community. With these resulting insights inhand, we’re now working to systematically address thosegaps identified to improve cancer survivors’ outcomesand experiences.What do you find most rewarding in your positionand your work at the NCI?I genuinely love working at the NCI and the Division ofCancer Control and Population Sciences. My colleaguesall have a sense of commitment and dedication topromote health and wellbeing through scientific research.Before joining the NCI as the Cancer SurvivorshipDirector, I was a clinical doctor caring for adult survivorsof childhood and young adult cancers. Now I can helpgenerate ideas and make an impact on a much largerscale. Having that platform and opportunity to dosomething meaningful is rewarding for me.What led you to a career in oncology?By profession, I am a general internist. I completed myresidency at Columbia University Medical Center in NewYork City. I loved caring for patients with complicatedmedical histories, comorbidities, financial challengesand language barriers. You really have to think carefullyabout prioritizing care for patients and understanding therange of factors in your patient care to make sure theywill have the best outcome. After completing my generalinternal medicine fellowship, I joined as a junior facultyContinued on the next page9

[ ADVOCACY MATTERS ]“ Oncology is advancing at amagnitude never experiencedbefore. We are discovering newtherapies, new strategies, newmethods for diagnosing cancer,and expanding supportive andpalliative care.”member in the survivorship program at Memorial SloanKettering Cancer Center, working under Drs. KevinOeffinger, Mary McCabe and Charles Sklar. I did not haveexperience in cancer survivorship, but quickly learned thatcaring for cancer survivors was like the best of internalmedicine: cancer screenings, surveillance for recurrence,care coordination, managing toxicities — all things thatintrigued me in treating patients in internal medicine.Why is understanding cancer survivorshipso essential, and do any specific aspects ofcancer survivorship research impact peoplewith lymphoma?Cancer survivorship is unique, and cancer diagnosis andtreatment are not like any other experience. Yes, thereare parallels in other illnesses and parallels in otheraspects of health services, but there is nothing like cancersurvivorship. At the same time, I feel we as providers inprimary care and some subspecialty services can carefor cancer survivors. Studies demonstrate that providersshare a desire to do a good job in caring for survivors,but often lack knowledge. The ability to connectproviders to resources to support the best care for cancersurvivors remains a challenge. Improving electronicmedical recordkeeping and better care coordination aretwo significant steps we can take to assist providers incaring for cancer survivors.Lymphoma holds a special place for cancer survivorshipresearchers because many early survivorship researchstems from Hodgkin lymphoma (HL) and discoveriesabout mantle radiation and chemotherapy treatments forthat disease. Hodgkin lymphoma survivorship researchprovided the paradigm for the late effects of cancer andPULSE WINTER EDITIO

Dr. Michael Williams sees lymphoma research as having a ripple effect. Like ripples expanding across the water when an object is dropped into it, being a lymphoma researcher has a much larger impact on the lives of those touched by this disease. 12 Updates fr

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