IMF Impact Report 2022

believehopeistheanchorthat

We will experiment and collaborate for the good ofthe patients we support. Wewilladvocatefor increased access, onbehalfofpatients whohavenot benefitedas much fromthediscoveries andinnovationofthelast two decades. We willusedatafor good, leveraging artificial intelligenceso we canprovide theright personalizedinformationtothe right patient at theright time. We will doubledown onhelping and assisting support groups aroundthe country We willenhanceour globalalliances. We will helppatientsreimagine whatit means tolive withmye!omaandchallenge ourselvesandour partners toaccelerate the pathtoacure."

Yelak Biru IMFPatient,President&CEO

ABOUT THE INTERNATIONAL

Foundedin7990,the InternationalMyeloma Foundation (IMF) isthefirstandlargestglobal organizationfocusingspecificallyonmultiple myeloma.The IMF'sreachextendstomorethan 525,000membersin740countriesworldwide. Our Mission: The IMF isdedicatedtoimproving thequalityoflifeofmyelomapatientswhile workingtowardpreventionandacure.

WHY OUR MISSION?

Multiplemyelomaisstilloftenunheardof. Unfortunately,manypatientsexperiencea delayeddiagnosis. Itisacomplexdiseasethat presentsinavarietyofways. Waysthatcanbe mistakenforotherconditions.

Yet, multiple myeloma is the second most common blood cancer in the world. Inthe U.S., approximately35,000arediagnosedwiththe diseaseeachyear.

Today,thereisstillnocureformyeloma. The good news: peoplewiththediseaseare livinglongerthaneverbefore.

MYELOMA FOUNDATION

Itisthe IMF's visiontosupportthesepatients andtheirlovedonestolivethebestqualitylives possible, andtooneday, findacureformyeloma. That'swhywehaveafour-prongedapproachto ourmission: Research, Education, Support, and Advocacy.

WHAT IS MULTIPLEMYELOMA?

Multiple myeloma isacancerofthebone marrowplasmacells-whitebloodcellsthat makeantibodies.Acancerousormalignant plasmacelliscalledamyelomacell.Myeloma iscalled "multiple" becausetherearefrequently multiplepatchesorareasinbonewhereit grows. Itcanappearasbothatumor and/oran areaof bone loss, anditaffectstheplaceswhere bonemarrowisactiveinanadult: thehollow area withinthebonesofthespine, skull, pelvis, ribcage, andtheareasaroundtheshoulders andhips.

FAST FACTS:

MYELOMA IS THE SECOND

MOST

MULTIPLE MYELOMA IS 2X

THE PATIENTJOURNEY

TIM GAVALLAS

Eventhoughmultiplemyelomais stillincurable, itishighlytreatable. Manypatientsarelivinglongerthan everbefore. OnesuchpatientisTim Gavallas. Diagnosedatage38,Tim hasbeenabletoadapthislifestyle toremainactive. In2020, he traveledtoTanzaniaandhikedat Mt. Kilimanjaro.

InTim'swords:

"/ gotthisideathat when Iwalk intothecancer center, I'm walking down that arenatowardsthering. Igot the fans allthere, and !just imaginethat I'mafighter.And I stepinthering, and I'm getting my treatment, anditjusthelpsme tolandthatknockoutblowinto myeloma.Just winthe fight."

Tim Gavallas

9-year myeloma survivor, police officer,and father of twin boys

"WEHAVE THE RICHY TO BE BOLD AND TO NOT BE CONSTRAINED BYTHE PAST OR THE NEW NORMAL.

COMMON BLOOD AS COMMON IN PEOPLE CANCER IN THE WORLD OF AFRICAN DESCENT

IN THEU.S.EVERY 15MINUTES MULTIPLE MYELOMA SOMEONEISDIACNOSED IS NOT YET CURABLE, WITH MYELOMA BUT IT IS TREATABLE

THE ORIGIN OF THE IMF IS ROOTED IN THE PATIENTlOURNEY

Brian D. Novis was diagnosed with multiple myeloma in 1989 at age 33. He and wife Susie as well as Brian's physician at the time, Dr. Brian G.M. Durie, founded the IMF a year later. Together, the three joined forces and set out to educate patients about the little-known blood cancer and available treatment options.

A former executive headhunter, BrianNovis started the IMF with humble beginnings andhighhopes. In his garage, he was armed with only a borrowed typewriter while sitting on a lawn chair. By 1991, the disease took an enormous physical toll on Brian. Extensive bone damage forced him to work from his bed at home.

Brian passed away in July 1992, but his dream continues to live on. "In my mind, he gave his life for this Foundation. And there was no way I was going to let it fall apart," said Susie Durie, IMF Founder and Director of Global Patient Initiatives.

Each day since then, the IMF has pushed aheadwith compassion, innovation, and urgency.

ABOUT SUSIE DURIE

In 1990, Susie Novis Durie founded the International Myeloma Foundation (IMF) along with her late husband, Brian Novis and Dr. Brian G.M. Durie, with these key objectives in mind: advancing myeloma research; and developing and implementing patient and physician educational programs in myeloma.

Susie Durie was elected Executive Director of the IMF in 1992. For 31 years, under her careful direction, the IMF experienced remarkable growth-programs she developed became models for other organizations worldwide. Today, she serves as the IMF's Director of Global Patient Initiatives.

CATCHING THE BLACK SWAN IN ACTION

The Black Swan Research Initiative (BSRI) sponsors more than 50 global projects aimed at curing multiple myeloma. This map outlines the key ongoing BSRI projects. Visit the IMF website to learn more about these Black Swan Research Projects.

BLACKSWAN

8

"Cure" Trial NCF Lab **

Population-Based Study

Australia Sequencing Study

Early Disease

Full Sequencing * I 8 GERMANY

E **8

Heidelberg Familial-Based Study

Comprehensive Characterization of L-T Survivors

Imaging

Family Studies

Retrospective Studies

MRD Testing (Increased Sensitivity, Blood Biopsy)

CESAR and ASCENT Trials

Immune Monitoring

Blood Monitoring

Single Cell Resistance Analysis

Pipeline Trials * Trials Pending

BSRl'S KEYACCOMPLISHMENTS

Asian Trials Network

Centralized NCF/ Risk Assessment

Blood DNA Mutation Analysis

Clincal Trial Assessment

Under the leadership of Alberto Orfao, MD, PhD (University of Salamanca), Spanish BSRI team members have developed a method to track myeloma at low levels of disease. Passing bone marrow cells through the flow cytometer, a combination of eight monoclonalantibodies were used to detect even one out of a million cells as myeloma cells (with a sensitivity at 10-6) This method called Next Generation Flow (NGF) includes a specialized software package that automates the myeloma cell detection process. Developed at the commercial level, its FDA approval is expected during 2023. The BSRI team continues to enhance MRD testing. Using an immunomagnetic bead approach, team member Bruno Paiva, PharmD, PhD (University of Navarra) has been able to improve sensitivity to the 10-s, detecting one out of 100 million cells.

WHY THIS MATTERS: This level of sensitivity enables MRD monitoring using blood samples rather than bone marrow. This is not only a huge advantage for patients. It also allows detection of myeloma cells not just from bone marrow but from any soft tissue or area of myeloma outside the bone marrow (or, extramedullary disease).

RESEARCH CLOSERTOACURE

iSTOPMM: STOPPING MYELOMA IN ITS TRACKS

TheiStopMMprojectis thelargestrandomized trialthathaseverbeenconductedinanytype ofcancerresearch.ThisprojectinIceland involvesthescreeningmorethan 85,000 individuals overage40.Theseindividuals agreedtoparticipateinthisrandomizedtrial.

WHY THIS MATTERS:

TheiStopMM project is groundbreaking for many reasons, and the key ones include:

It is the largest myeloma trial with informed consent ever.

Through screening, smoldering multiple myeloma can be detected earlier. Therefore, intervention (or, treatment) can happen earlier as well.

The project demonstrates that screening can potentially become the new standard of care.

The IMF, as anindependententity, was able to forge a partnership between the University of Iceland and the decode Genetics facility in the country, bringing together private and academic research in one setting.

Visit the IMF website to learn about the iStopMM project and its latest developments at the 63rd American Society of Hematology (ASH) Meeting and at the 64th ASH meeting

ONE OF2 "CURE" TRIALS: THEASCENT TRIAL

The U.S.-based ASCENT trial (Aggressive Smoldering CureEvaluating Novel Therapies) uses a combination ofcarfilzomib, lenalidomide, dexamethasone, and daratumumab in high-risk smoldering multiple myeloma. Its goal: to learn whether starting treatment early substantially improves outcomes, leads to a higherlevelofundetectedminimalresidual disease (MRD), sustained remissions, and potentialcure.

ONE OF2 "CURE" TRIALS: THE CESAR TRIAL

genetic,

along with an increased risk of myeloma's progression could open the door to early intervention efforts in high-risk patients and possible preventive strategies. This would improve overall survival and quality of life for patients worldwide."

Dr. Sigurdur Kristinsson Principal Investigator, iStopMM Project

The results of the ASCENT trial were presented at the American Society of Hematology Annual Meeting in December 2022 by Dr. Shaji Kumar from the Mayo Clinic, who leads this Black Swan Research Initiative protocol. They showed that 97% ofthepatientshad an overallresponse inthistreatmentprotocoland that 84% had a minimal residualdisease-negativestatus.

WHY THIS MATTERS: In this video Dr. Brian G.M. Durie comments, "We are quite optimistic that a number of these patients will indeed have sustained MRD-negative status and may end up indeed being cured by this early aggressive intervention."

The CESAR trial is one of three BSRI-funded "Cure" trials. The CESAR trial is ongoing in Spain with Professor MarfaVictoriaMateos as the Principal Investigator. CESAR uses the combination of carfilzomib, lenalidomide, and dexamethasone with autologous stem cell transplant in the same setting as ASCENT. Its results were very similar to ASCENT, with 63 percent of patients achieving MRD negativity after maintenance (a little less as compared to the ASCENT trial). With almost 6years of follow-up (70.l months), 5 patients have progressed with 94 percent of patients still in remission. Thus far, only 7 patients have died-giving a 6-year survival rate that's also in the 90 percent range.

Longer follow-up is required for both trials, but it is reasonable to anticipate excellent long-term benefits.

"Myeloma is no longer an end-all. We can help all of our patients by getting blood tests routinely and doing that at an earlier age in your life and doing it eachyear, and medicine, that is prevention, and catching things early is the name of the game. I'm walking, talking proof of that."

SHOWCASED 10 ABSTRACTS (INCLUDING 4ORALPRESENTATIONS AND 6 POSTERS WITH DATA FROM THE BSRI AND iSTOPMMPROJECT) AT THE 64TH ANNUAL AMERICAN SOCIETYOF HEMATOLOGYMEETING

"Understanding the epidemiologic,

and immunologic factors that go

Leo Dierckman, myelomapatient, with his daughter Dani

Leo Dierckman

Myeloma patient, first ASCENTtrial participant

RESEARCH CLOSERTO A CURE

COMBATING RESISTANT DISEASE

The Black SwanResearchInitiativeteamhas taken the first steps to achieve cure for a subset ofpatients. This subset is made up ofpatients who have achieved MRD negativity with currently availabletherapies. The next challenge is to eliminate residual disease in patients who remain persistently MRD positive.

WHY THIS MATTERS: With this research, it may one day be possible to prevent the development ofrecurrent resistant disease.

THE PATIENTJOURNEY SHERI

BAKER

Diagnosed with myeloma in 2077, Sheri Baker finds inspiration in knowing that organizations like the IMF are working diligently toward finding a cure. She hopes that like she has beaten the odds with myeloma, the IMF will beat the odds in disease prevention and finding a cure.

In Sheri's words-

"For everyperson that got fiveyears, there's somebody who got 70 years and somebody who got oneyear. Those arejust averages and I plan on beating the average. I haveso far."

Sheri Baker

11-year myeloma survivor and Treasure

Multiple BSRl-sponsored clinical trials are being set up in the U.S., Europe, and theAsia-Pacific region to study and treat patients with MRDpositivedisease. These studies will use new therapiesto attempt toeliminateresistantMRD myeloma cells.Inaddition, many projects are studying various aspects ofresidualdisease.

WHY THIS MATTERS: These studies, and namely one ofongoing oflong-term survivors, will improve theunderstandingofthe nature oftheir disease, treatments, and response to treatment.

FUNDING LEADING RESEARCHERS

The IMF continues to fund leading researchers. Learn more about IMF Research Awards

WHY THIS MATTERS: By funding researchers early in their careers, theIMF is inspiring the brightest minds to enter the field ofmyeloma.

WHAT IS THE IMWC?

The IMF's International Myeloma Working Group (IMWG) is a research network ofmore than 270 multiple myeloma experts from 42 countries. These experts collaborate to develop key criteria for myeloma diagnosis and response.

WHY THIS MATTERS: TheIMWG diseasestaging criteria -International Staging System and Revised-International Staging Systemset the barformyeloma healthcare practitioners worldwide.As a result, the IMF has standardized

the template for collaboration among leading researchers and countries.

LOOKING AHEAD: WHAT ARE THE IMWG'S MAIN AREAS OF FOCUS?

Every year at its Summit, the IMWG lines up plenary sessions and working groups to provide committee reports. The iStopMM project was reported on at the Summit as well as the following: Employing precise testing for high-risk smoldering multiple myeloma so intervention begins early

Continuing to treat early relapse with the latest combinations immunomodulatory agents (IMiDs), bispecific antibodies, and new novel agents

Developing more manageable and affordable next-generation flow tests to detect minimal residual disease

Improving assessment offrontline therapy for patients in line with their choices for and their access to care

Building an immune therapy database

Establishinga virtual issue biobank Using mass spectrometry to better understand low-level M-spikes

Read the full report from the 2022 IMWG Summit

WHAT IS THE ASIAN MYELOMA NETWORK?

Myeloma is a growing health problem inAsia, with an incidence that is approaching that in Western countries, but with a much larger population base. Because ofthis, in 2071, the International Myeloma Foundation (IMF) established theAsian Myeloma Network (AMN) at a meeting in Singapore.AMN brings together myeloma experts in these countries in the Asia-Pacific region: China, Hong Kong, Malaysia, Taiwan, Japan, South Korea, Singapore, and Thailand. In 2022, Vietnam and the Philippines also began participating.

THE PATIENTJOURNEY

Jim Omel is no stranger to healthcare. As a doctor himself, Jim was diagnosed with multiple myeloma in 7997. Even though he is now retired from family practice medicine, Jim is an active cancer research advocate with the National Cancer Institute and other government entities. He is also a support group leader.

In Jim's words"Forget about what you might read in the literature from a few years ago. It's ancient history. We are going to get a cure. We are very close."

limOmel,MD

RESEARCH

A

THEONLY

•�11 f-.,� IN 2022

AMN COORDINATED 6 MYELOMA·RELATED CLINICAL TRIALS

2022 AMN ANNUAL MEETINGS

In2022,the InternationalMyeloma Foundation's (IMF) 6th Annual Asian Myeloma Network (AMN)SummitwasheldfromOctober 73-16 inSingapore.Theprogramsforthisyear includedthe2nd AMNMasterClass, the2nd AsianPatientSupportSeminar, andthefull AMN Summit2-dayProgram, with allthree heldconsecutively.

Attendance to these programs was noteworthy: 95 physicians from 8 Asian countries participated in the AMN Master Class; 87 patient-care partner leaders from 7 Asian countries attended the Asian Patient Support Seminar; and 114 myeloma experts from 70 Asian countries participated in the formal AMN Summit.

Milestones achieved by the AMN include the following:

Identified new AMN clinical trials that use MRD and that locate new patients to enroll who are usually excluded from trials

Launched the AMN Tissue Bank and its research applications

Improved ways to identify and treat high-risk patients, including a clinical trial

Developed Asian resource stratified imaging guidelines

Strengthened partnerships with AMN's academic contract research organization

Expanded involvement ofyoung myeloma doctors

Enhanced attention for myeloma patient support throughout Asia

AN EXCITINC DEVELOPMENTAMN Summit participants were excited about the iStopMM Project. They asked about the possibility ofdoing a similar population screening program in the Asia-Pacific region, notably in Singapore.More to come in 2023

NLB'S OVERALL REACH IN 2022 15K+ PARTICIPANTS

WHATISTHENURSELEADERSHIPBOARD?

The IMF's NurseLeadershipBoard (NLB) is composed ofoncology nurse experts who provide care for multiple myeloma patients at leading medical centers. The mission ofthe NLB is to enhancethe nursing care and self-care of patients with myeloma.

A REPORT FROM THE NLB MEETING IN 2022

The NLB held their annual planning meeting in Boston in September 2022. IMF Senior Vice President ofBusiness Relationship Management Diane Moran opened the meeting, pointing to the 32 years ofinnovation ofthis IMF entity. Dr. Andrew Yee from Massachusetts General Hospital gave a talk, addressing drugs in development, including venetoclax, bispecific antibodies, and cereblon E3 ligase-modulating drugs (CELMoDs). Donna Catamero, ANP-BC, OCN, CCRC (AssociateDirector,Myeloma TranslationalResearch, Mount Sinai Health System- New York) spoke about the 16-year history ofthe NLB andrecognizedthe contributions ofindividual NLB nurses as well as the many publications ofthe NLB. Beth Faiman, PhD, RN, MSN, APRN-BC, AOCN® , FAAN (Cleveland Clinic, Taussig Cancer-

Cleveland), editor oftheJuly 2022Jouma/ofthe Advanced Practitioner in Oncologysupplement, invited the authors ofthis editiontoreview their individual case studies. IMF ChiefScientific Officer and Chairman ofthe Board Dr.Brian G.M. Durie updated all on the research in mass spectrometry and the IMF's Black SwanResearch Initiative® .

Finally, NLB memberslistenedtospecific members' presentationson thetopics ofclinical trials, structural racism and how it affects myeloma care, as well as gaps in care for bispecifics and cellular immunotherapy. The meeting closed with a hearty discussion ofprojects planned for 2023.

NLB EDUCATION INITIATIVES: MYELOMA UNIVERSITY

The Myeloma University series was createdand is being presented by the NLB nurse faculty to help improve nursing care in multiple myeloma by sharing the NLB's depth ofknowledge in an easily accessible format: 5-8-minute videos on key myeloma topics, accompanied by downloadable slides and educational resources for nurses, as well as toolsfor patients and caregivers.

Myeloma University is a FREE series ofmodules, which include:

Renal Impairment in Multiple Myeloma

Treatments for Multiple Myeloma- Part I (Steroids, IMiDs, and Pis)

How Treatments are Selected for Patients with Multiple Myeloma

Treatment ofMultiple Myeloma with Monoclonal Antibodies

CAR-T Therapy in Multiple Myeloma

Maintenance and Continuous Therapy in Multiple Myeloma

THE PATIENTJOURNEY

Diagnosedatage42,LindaHuguelet leadstheChattanoogaMultipleMyeloma Networkinggroupalongwithher husband.Shekeepsupwiththelatest developmentsinmyelomacareandhas reportedfromtheAmericanSocietyof Hematologyannualmeetingonbehalfof theIMFfornineyears!

InLinda'swords-

''Just the thought that it's related to the word 'cure' is so exciting and something that I really didn't think I would see in my lifetime."

Linda Huguelet Chatanooga Myeloma Support Group Leader and myeloma patient

LINDA HUGUELET

EDUCATION KNOWLEDGE IS POWER

KEYSTATISTICS ONTHE IMF'S 2022 EDUCATIONAL & AWARENESS OUTREACH

Because myeloma is often a misunderstood disease, the IMF educates patients, care partners, and healthcare professionals with our hundreds of resources, publications, videos, and programs.

THE M·POWER PROJECT

Myeloma is two times more common in people of African descent. Many African Americans with myeloma face issues with delayed diagnosis and lack of access toappropriate care. Partnering with cities across the U.S., the IMF's M-Power Project addresses barriers to care for African Americans living with myeloma.

TRANSLATED NEARLY60

THE PATIENTJOURNEY BONNIE DOWNING

Diagnosedwithmultiplemyelomamore than20yearsago,BonnieDowningnow speakstopatientsnationwideabouther experiencesandhowtohaveapositive mindsetdespiteadversity.

InBonnie'swords-

"Educate people on what to look for, on understanding their diagnosis, and more importantly, on where to gethelp. I don't want to saymypath was easy, but I've talked to some patients who didn't have the support I had. Be educated, know what to look for, and listen toyour body"

Bonnie Downing

20+-yearmyelomasurvivor

IMF PUBLICATIONSINTO 19 LANGUAGES

PATIENT-FOCUSED PUBLICATIONS

PUBLISHED 14 NEW PATIENT-FOCUSED MATERIALS TO ADD TOALIBRARYOF 100+ PUBLICATIONS MYELOMA·RELATED PUBLICATIONS

CONDUCTED30 EDUCATIONAL WEBINARS, WITHA COMBINED PARTICIPATION

By raising myeloma awareness and empowering healthcare professionals, community leaders, neighborhoods, and families, the M-Power Project aims to break down these barriers for the African American myeloma community. This past year, the IMF continued to extend M-Power'sreach, with workshops focused on the following cities. BA

3,lOOVIEWS

Awifeandcarepartnertoherhusband, myelomapatientTerrenceGreen,Toni GreenfirmlybelievesthatAfrican Americansneedaccesstogooddoctors.

InToni'swords-

PRODUCED AND SENT 235 EMAILS TO 5.6 MILLION PEOPLE WORLDWIDE

CHARLOTTE 2WORKSHOPS

16,000

VIEWSTOTAL

3,600VIEWS NEW

1,200VIEWS

"Theyneedgoodmedicaltreatment. Theyneed information about myelomaoncethey'rediagnosed, andtheyneedtobeprovided with resources. Makesuretheyknowthat resources areavailableafter they're diagnosed because it'sexpensive. No doubt."

Toni Green Myelomacarepartner

Photo (From Left): Terrence and Toni Green intheir home

SUPPORT

WE'RE HERE FORYOU!

MYELOMAACTIONMONTH2022

One ofthe most important ways the IMF believes we canhelpimprove the quality of life ofmyeloma patients is byincreasing awareness ofthe disease. That's why we startedMyelomaAwarenessMonthinMarch 2009. Today, we encourage individuals to take simpleactionstobuildawareness, andthat campaignis known as Myeloma Action Month

The IMFis proudtoreport that the myeloma community went above andbeyond when it came totaking action andmaking a differenceformyeloma. Despitethepandemic andan ongoing conflictin Ukraine, the global communitycame together to participatein theMyelomaActionMonthmovement-with morethan 30millionpeoplein46countries reachedacrossthe globe.

SUPPORT WE'RE HERE FORYOU!

THEIMFSUPPORT CROUPTEAM

CONNECTED942 PATIENTS AND CARE PARTNERS

THROUCHSUPPORT GROUP VISITS/ PRESENTATIONS, EDUCATIONAL MEETINCS, ANDTECHSUPPORT

The IMFsupportsanetwork ofmorethan150myelomaspecificsupportgroupsthathold regularmeetingsinthe U.S. and offertrainingforhundredsof dedicated patients, carepartners, socialworkersandnurseswho volunteertoleadsupport groups intheircommunities.

THEIMFINFOLINE

RESPONDED TO 3,500 PATIENTINQUIRIES

BLOODCANCERAWARENESSMONTH 2022

This yearin September, the IMFbrought multiple myeloma-the second most common type of blood cancer-to the forefront throughits #kNOwMyelomacampaign.Thecampaign garnered aglobalreachof17.8 millionin 37 countries andwasanastoundingsuccess.

For 2022, the IMF's goal was toreach people who may not haveheard ofmyeloma as well as those who are living withthis type ofblood cancer.

The IMF's BloodCancerAwareness website at knowmyeloma.org has a rich trove ofmyeloma facts, research breakthroughs in myeloma treatment, andinspirationalstories ofhope and resilience fromthose living withthe disease.

The lnfoLine is the IMF's multiple myeloma cancer information line.Staffed by dedicated coordinators, the IMF's toll-free lnfolineat 800-452-CURE (2873) provides vitalsupport andinformation viaphoneandemailto thousandsoffamilieseachyear.

OTHERIMFSUPPORTACTIVITIES

The IMF's23rdAnnualSupportGroup Leaders Summit (SGLS) tookplacefromSept. 8-11 in Phoenix,AZ.ThisSummitbrought together 114 supportgroupleaders who engagedinthis1st hybridprogramwith59leadersattendinginperson and 55attendingvirtually. We werethrilledto welcome28first-timeattendeesand welcomeback 86returningleaders.Theprogramfocusedonkey myelomaupdatesandresources,tosharenew knowledge, insights, andskills. InAugustthe IMF heldsixpre-Summit virtual breakout workinggroup meetings withsummariespresentedanddiscussed.

The IMFbringssupportgroupleaderstoASH annually tosharethepatient/leaderperspective.Theseleaders havebroadinterestsandreportonSmoldering,Newly Diagnosed,Relapse/Refractory,Access&Diversity, MRD/tests,andmore.Thisyear'steamhad13leaders whoattendedvirtuallyandinperson,sharingtheir experiencesviasocialmediaandbiogs.Followthese leadersandreadtheir biogs here.

THE PATIENTJOURNEY SUE MASSEY

Sue Massey, alongwith Carrie Palmer, co-facilitatesthe StrengthThrough Inspiration:AVirtualSupportGroup for Multiple Myeloma Patients and CaregiversWho HaveYoung Children. Diagnosed with myeloma in2013 atthe young age of 42, Sue seesthe importance of support groups in herjourney.

In Sue's words-

"For me, it is so easy to get bogged down by 'why me?' or the 'shoulds and woulds.' But focusing on others really helped. I replaced 'the why me? the shoulds and the woulds' with 'how can I help?' and 'what can I do to make the life of someone else better today?' The IMF was great in helping me start a support group for other myeloma patients who have young children."

Sue Massey

9-yearmyeloma survivor and Support Group Leader

ADVOCACY JOINTHEMOVEMENT

The IMF's Advocacy teameducatesandempowers thousandsofindividualsoncriticalissuesthat affect themyelomacommunity, bothintheU.S. andacross theglobe. TheseIMF-trainedadvocatesmakea significant positiveimpacteachyear.

WHAT IS THE CLOBAL MYELOMA ACTION NETWORK?

The IMF Global Myeloma Action Network (GMAN) is composed ofmultiplemyelomapatient organization leaders around the world. GMAN aims to supporttheneeds ofmyeloma patientsandworks to help gaintreatment access for myeloma patients around the world.GMAN brings together advocacy leaders in multiple myeloma to improve the lives of myeloma patients around the world.

WHAT IS CMAN'S MISSION?

THE PATIENTJOURNEY THOMAS GOODE

Diagnosed with myeloma in 2005 at the young age of34, Thomas Goode advocates for myeloma patients nationwide.

In Thomas's words"BacktowhatIwouldtellthedoctors, orthephysicians-thatsometimes wehavetomeetthepatientswhere they'reat.Ispeakwithalotof myelomapatientsinruralareas. Theydon'thavetheluxurythatIhave atfourmajorinstitutions. So, Iwould tellthemtoteachuptheselocal doctors, letthemknowwhattolook forwhenit comes topatientsthatcome inwiththesetypeof[myeloma] symptoms."

Thomas Coode 17-year myeloma survivor, Triangle Area Support Group Leader, and patient advocate [pictured above with IMF President and CEO Yelak Biru]

M UNITED MORETHAN 30

COUNTRIES TO IMPROVEACCESS TO MYELOMACARE WORLDWIDE

GMAN's global mission is to improvethe lives of myeloma patients, raise myeloma awareness, enhance the capabilities ofpatient advocacy groups, build the capacity oflocal myeloma organizations, and increase worldwide access to medicine and treatment.

THE2022 CMAN ANNUAL SUMMIT

The 2022Summit ofthe IMF's Global Myeloma Action Network (GMAN) began onMay 20 inMilan, Italy. More than30 representatives ofinternational organizations that serve the global myeloma community celebrated the opportunity to come together face-to-face for the first time since 2019.

The GMANSummit focused on:

Planning to start and sustain myeloma support groups in new regions worldwide

Strategizing onhowtoovercomeaccessand supplychainissuesfor CART-celltherapy

Reviewing ofnew treatments for relapsed disease

Increasing unification in calling for all patients to have equal access to prescribed approved medication

Discussing how to collaborate with the World Health Organization (WHO) to benefit myeloma patients worldwide

Overall, GMAN members continue to strive to bring "No Borders, No Barriers, No Limits" to life!

IMF ADVOCACY TEAM ACTIONS IN2022

In 2022, the IMF Advocacy team continued discussions with legislators about core issues for the myeloma community. One such issue is patients having access to affordable, uninterrupted orally administered cancer therapies. This issue has become even more pressing during the COVID-19 pandemic. Oral parity legislationensures oral chemotherapy drugs, like many ofthe drugs taken by myeloma patients, are covered by insurersin the same way intravenous (IV) therapies are.

At the State Level

Over the years, the IMF Advocacy Team's led efforts that contributed to 43 states and Washington, DC, to pass OralParity Laws.

At the Federal Level

Thatsaid, federallegislationisstillneededtohelpmorethan130million people with federally regulatedinsuranceplans.TheIMF hasbeenactively workingtoaddressthisissueforthosewhodonotbenefitfromthestatebills. Thislegislation, knownastheCancerDrugParityAct, hasbipartisan support and wouldhelpmany oftheindividualsnotreachedbythestatelevellaws. The IMF-led CoalitiontoImproveAccesstoCancerCare (CIACC) hasaccomplishedrecordprogresswithits worktoadvanceoralparitylegislation.

THE U.S.

MOBILIZED MORETHAN 100+ ADVOCATES TOTAKELEGISLATIVE ACTION IN

The IMF Advocacy Team led CIACC members in conducting meetings about this issue with Members oftheHouse and Senate, including with Leader McConnell's Office and Leader Pelosi's Office. Also, IMF Advocacy sent letters to top policy makers about how the Cancer DrugParity Act could help patients. The bill receivedtraction in theCOVID-19 legislative discussions, but it was not included in reliefpackages. Despite this, there was increased support. At the end ofthe last Congress, the bill ended up with 170House co-sponsors and 19 Senate co-sponsors. We have already surpassed this success in the Senate.

Actions Taken by Veterans Against Myeloma

The team advocated for the passage ofthe Sergeant First ClassHeath RobinsonHonoring Our Promise to Address Comprehensive Toxics (PACT) Act of2022, which is a comprehensive package aimed at addressing toxic exposure related diseases, like myeloma. This package should help streamline access to veterans' benefits and expand access for individuals with both myeloma and MGUS.

4400 Coldwater Canyon Ave., Suite300

Studio City, CA 91604, USA

800.452.CURE (2873) USA & Canada

ThelMF@myeloma.org

myeloma.org