LEUKEMIA AND LYMPHOMA SOCIETYINC
3 INTERNATIONAL DRIVE SUITE 200, RYE BROOK, NY 10573 www.lls.org

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Organizations Filed Purposes: OUR MISSION IS TO CURE LEUKEMIA, LYMPHOMA, HODGKIN'S DISEASE AND MYELOMA, AND IMPROVE THE QUALITY OF LIFE OF PATIENTS AND THEIR FAMILIES.

A) RESEARCH PROGRAMS WE WILL CONTINUE TO SUPPORT RESEARCH THROUGH OUR INNOVATIVE AND INTEGRATED FUNDING PROGRAMS, UNTIL EVERY PATIENT HAS A SAFE AND EFFECTIVE THERAPY. IN FISCAL YEAR 2020, LLS SUPPORTED RESEARCH IN THE U.S., CANADA AND 8 OTHER COUNTRIES WITH A TOTAL RESEARCH DISBURSEMENT OF APPROXIMATELY 26.8 MILLION. RESEARCH FUNDING WAS DISTRIBUTED ACROSS ALL BLOOD CANCERS. BEAT AML MASTER TRIAL BEGINNING NOVEMBER 2016, LLS LAUNCHED THE BEAT AML MASTER TRIAL, A COLLABORATIVE CLINICAL TRIAL TESTING SEVERAL NOVEL TARGETED THERAPIES FOR PATIENTS WITH ACUTE MYELOID LEUKEMIA (AML) DESIGNED TO FACILITATE FDA APPROVAL OF NEW DRUGS AND CHANGE THE TREATMENT PARADIGM FOR PATIENTS DIAGNOSED WITH AML BY DEVELOPING MORE INDIVIDUALIZED, EFFECTIVE TREATMENT APPROACHES. THE MASTER TRIAL INVOLVES COLLABORATIONS WITH MULTIPLE MEDICAL INSTITUTIONS, DRUG COMPANIES, A GENOMIC PROVIDER, A CLINICAL RESEARCH ORGANIZATION, AND THE FDA, ALL OF WHOM HAVE COMMITTED TO WORKING COLLABORATIVELY. AT THE END OF 2020, THE BEAT AML TRIAL HAD ENROLLED 1,000 PATIENTS. OUR CRITICAL ROLE LLS PROGRAMS ACCELERATE RELEVANT RESEARCH OUTCOMES BY: - BUILDING A FOCUSED RESEARCH WORK-FORCE: ASSURING THE NEXT ROUND OF BREAKTHROUGHS REQUIRES THAT YOUNG INVESTIGATORS BE ENCOURAGED TO WORK IN BLOOD CANCER RESEARCH FIELDS. - TURNING DISCOVERIES INTO NEW THERAPIES: FUNDAMENTAL NEW FINDINGS CAN BE TRANSLATED INTO SAFE AND EFFECTIVE TREATMENTS THAT CAN ULTIMATELY PROLONG AND ENHANCE PATIENT LIVES. - SUPPORTING SYNERGY: LARGE GRANTS AND CONTRACTS ENABLE SCIENTISTS IN ACADEMIA AND THE PRIVATE-SECTOR TO COLLABORATE, COMBINING RESOURCES AND EXPERTISE TO PRODUCE MORE AND FASTER ADVANCES. - FILLING A VOID: RESEARCH PROJECTS THAT ARE HIGH-RISK AND/OR ADDRESS RARE CANCERS ARE LESS LIKELY TO BE FUNDED BY GOVERNMENT AGENCIES OR FOR-PROFIT COMPANIES, BUT MAY PROVIDE IMPORTANT ADVANCES. - SPEEDING NEW TREATMENTS TO PATIENTS: PARTNERING WITH BIOTECHNOLOGY AND PHARMACEUTICAL COMPANIES CAN ADVANCE PROMISING THERAPIES THROUGH CLINICAL TESTING, FASTER. PAST ADVANCES MADE WITH LLS RESEARCH FUNDING GENEROUS DONORS HAVE HELPED LLS SUPPORT RESEARCH THAT HAS ALREADY BENEFITED BLOOD CANCER PATIENTS AND MANY OTHERS. ADVANCES INCLUDE: - MULTI-DRUG THERAPIES THAT ARE MORE EFFECTIVE THAN TREATMENTS WITH SINGLE ANTI-CANCER AGENTS, - BONE MARROW / STEM CELL TRANSPLANTATION AND SUPPORTIVE CARE TREATMENTS FOR PATIENTS WHO RELAPSE DESPITE THE BEST AVAILABLE THERAPY, AND, - TESTS THAT DISTINGUISH SPECIFIC CHARACTERISTICS OF PARTICULAR BLOOD CANCERS FOR ACCURATE DIAGNOSIS OF CANCER SUBTYPES, AND FOR "RISK STRATIFICATION" TO SELECT AN OPTIMAL THERAPY. TARGETED THERAPY RESEARCH DISCOVERING THE MOLECULAR ABNORMALITIES THAT CAUSE PARTICULAR TYPES OF BLOOD CANCER HAS BEEN USEFUL IN DIAGNOSIS AND RISK STRATIFICATION, AND IN NEW "TARGETED DRUG" DEVELOPMENT. LLS-FUNDED INVESTIGATORS HAVE HELPED ADVANCE MOLECULARLY TARGETED TREATMENTS THAT CAN SELECTIVELY KILL BLOOD CANCER CELLS VERSUS NORMAL CELLS. MANY OF THESE NEW TREATMENTS BENEFIT NOT ONLY BLOOD CANCER PATIENTS, BUT ALSO PATIENTS WITH OTHER DISEASES. FOR EXAMPLE: - GLEEVEC IS FDA-APPROVED FOR PATIENTS OF ALL AGES WITH CHRONIC MYELOID LEUKEMIA (CML), AND IS ALSO APPROVED FOR PATIENTS WITH ONE FORM OF ACUTE LYMPHOID LEUKEMIA (ALL), MYELODYSPLASTIC SYNDROMES (MDS), MYELOPROLIFERATIVE DISORDERS AND RARE FORMS OF STOMACH AND SKIN CANCERS. RELATED DRUGS, SPRYCEL AND TASIGNA, ARE APPROVED FOR PATIENTS WHO DO NOT BENEFIT FROM GLEEVEC. ONE OR MORE OF THESE DRUGS ARE ALSO SHOWING PROMISE FOR PATIENTS WITH VARIOUS LYMPHOMAS, ACUTE MYELOID LEUKEMIA (AML), CHRONIC LYMPHOCYTIC LEUKEMIA (CLL), AND OTHER CANCERS, INCLUDING BRAIN, BREAST, HEAD-AND-NECK, LUNG, PANCREATIC, AND PROSTATE CANCERS, AND PATIENTS WITH OTHER DISEASES INCLUDING ALZHEIMER'S, ASTHMA AND PULMONARY HYPERTENSION. - RITUXAN WAS THE FIRST FDA-APPROVED, ANTI-CANCER ANTIBODY DRUG, DEVELOPED FOR PATIENTS WITH FORMS OF B-CELL NON-HODGKIN LYMPHOMA (NHL). IT IS NOW ALSO APPROVED FOR CLL PATIENTS AND AS A "MAINTENANCE" THERAPY FOR FOLLICULAR LYMPHOMA PATIENTS, AND SHOWING PROMISE FOR PATIENTS WITH ALL AND AFTER STEM CELL TRANSPLANTATION. IN ADDITION, IT IS APPROVED FOR TREATING PATIENTS WITH SEVERE RHEUMATOID ARTHRITIS AND TWO OTHER TYPES OF AUTOIMMUNE DISEASES. A RELATED ANTIBODY DRUG, ARZERRA, IS APPROVED FOR CLL PATIENTS AND SHOWING WIDER PROMISE. - VELCADE, THALIDOMID AND REVLIMID ARE FDA-APPROVED FOR PATIENTS WITH MYELOMA AND ARE ALSO HELPING SOME PATIENTS WITH HODGKIN LYMPHOMA AND NHL. KRYPOLIS WAS RECENTLY APPROVED FOR MYELOMA PATIENTS FOR WHOM AT LEAST TWO PRIOR THERAPIES WERE INSUFFICIENT. ONE OR MORE OF THESE DRUGS ARE NOW BEING TESTED FOR PATIENTS WITH T-CELL AND B-CELL FORMS OF LYMPHOMA, ACUTE LEUKEMIAS, AS WELL AS AIDS-RELATED KAPOSI SARCOMA AND BRAIN, BREAST, COLORECTAL, HEAD-AND-NECK, KIDNEY, LIVER, LUNG, OVARIAN AND PROSTATE CANCERS, AND ALZHEIMER'S DISEASE. - ISTODAX, ZOLINZA, DACOGEN AND VIDAZA TARGET SMALL CHEMICAL, "EPIGENETIC" CHANGES. THE FIRST TWO DRUGS ARE APPROVED FOR PATIENTS WITH PERIPHERAL T-CELL LYMPHOMAS; THE LATTER DRUGS ARE APPROVED FOR MDS PATIENTS. ONE OR MORE OF THESE DRUGS ARE BEING TESTED FOR PATIENTS WITH ALL, AML, CML, CLL, MYELOMA AND FORMS OF NHL, AFTER STEM CELL TRANSPLANTATION, AND FOR PATIENTS WITH BREAST, BRAIN, KIDNEY, COLORECTAL, HEAD-AND-NECK, LUNG, STOMACH, PROSTATE AND OVARIAN CANCERS, MELANOMA AS WELL AS SICKLE CELL DISEASE AND PERSISTENT HIV INFECTIONS. - ADCETRIS WAS APPROVED IN 2011, AND IN JANUARY 2012. IT IS AN ANTIBODY- DRUG CONJUGATE THAT COMBINES AN ANTI-CD30 ANTIBODY AND THE CYTOTOXIC DRUG MONOMETHYL AURISTATIN E (MMAE). IT IS AN ANTI-NEOPLASTIC AGENT USED IN THE TREATMENT OF HODGKIN LYMPHOMA AFTER FAILURE OF AUTOLOGOUS STEM CELL TRANSPLANT OR THOSE WHO ARE NOT ELIGIBLE FOR ASCT AFTER FAILURE OF AT LEAST 2 MUTAGEN CHEMOTHERAPY REGIMENS. ADCETRIS WAS ALSO APPROVED FOR SYSTEMIC ANAPLASTIC LARGE CELL LYMPHOMA WITH FAILURE OF AT LEAST ONE PRIOR TREATMENT. - GAZYVA IS A HUMANIZED MONOCLONAL ANTIBODY USED AS A COMBINATION TREATMENT WITH CHLORAMBUCIL TO TREAT PATIENTS WITH UNTREATED CHRONIC LYMPHOCYTIC LEUKEMIA. IT WAS APPROVED BY THE FDA IN NOVEMBER 2013 AND BY THE EHA IN JULY 2014. - IMBRUVICA IS AN ORAL SMALL MOLECULE INHIBITOR AGAINST BTK KINASE. IT WAS FIRST APPROVED BY THE US FDA ON NOVEMBER 13, 2013 FOR THE TREATMENT OF MANTLE CELL LYMPHOMA PATIENTS WHO HAVE RECEIVED AT LEAST ONE PRIOR TREATMENT. ON FEB. 12, 2014 THE US FDA EXPANDED THE APPROVED USE OF THE DRUG TO CHRONIC LYMPHOCYTIC LEUKEMIA (CLL) PATIENTS WHO HAVE RECEIVED AT LEAST ONE PRIOR TREATMENT. ADDITIONALLY, IT RECEIVED FURTHER EXPANSION TO TREAT 17P DELETION IN CLL WITH OR WITHOUT PRIOR THERAPY. - ZYDELIG IS AN ORAL SMALL MOLECULE INHIBITOR THAT BLOCKS THE DELTA ISOFORM OF THE ENZYME PHOSPHOINOSITIDE 3-KINASE. IT WAS APPROVED BY THE FDA IN JULY 2014 TO TREAT RELAPSED/REFRACTORY CLL IN COMBINATION WITH RITUXAN. IT WAS ALSO APPROVED TO USE AS A MONOTHERAPY FOR RELAPSED MANTLE CELL LYMPHOMA AND FOLLICULAR LYMPHOMA. OTHER ACTIVE RESEARCH DIRECTIONS LLS-FUNDED RESEARCHERS ARE ALSO EXPLORING OTHER AREAS OF RESEARCH THAT HOLD PROMISE FOR PATIENTS: - NOVEL STEM CELL TRANSPLANTATION PROCEDURES: THESE INCLUDE SO-CALLED "MINI" TRANSPLANTS THAT USE LESS TOXIC PRE-TRANSPLANT TREATMENTS AND ENGINEERED DONOR CELLS THAT HELP REDUCE POST-TRANSPLANT COMPLICATIONS, MAKING THESE POTENTIALLY CURATIVE TREATMENTS AVAILABLE TO MORE PATIENTS. - IMMUNOTHERAPIES: INCLUDING ANTIBODIES, VACCINES AND ENGINEERED IMMUNE CELLS, THESE TARGETED THERAPIES HELP A PATIENT'S IMMUNE SYSTEM FIGHT INFECTIONS AND KILL RESIDUAL CANCER CELLS, PROLONGING REMISSIONS, AND PERHAPS ONE DAY REPLACING TOXIC CHEMOTHERAPIES. - DIAGNOSTICS: NEW TECHNOLOGIES MAKE IT POSSIBLE TO CHARACTERIZE THE ABNORMALITIES IN INDIVIDUAL CANCER CASES IN MOLECULAR DETAIL. THIS INFORMATION CAN BE USED TO HELP CHOOSE THE BEST POSSIBLE TREATMENT FOR EACH PATIENT, ESPECIALLY AS MORE TARGETED THERAPIES BECOME AVAILABLE. - QUALITY OF LIFE RESEARCH: THESE STUDIES INCREASE OUR UNDERSTANDING OF HOW SPECIFIC TREATMENTS CAN CAUSE DEBILITATING SIDE-EFFECTS, INCLUDING LATE- EFFECTS, AND WHICH PATIENTS ARE AT RISK FOR DEVELOPING THESE COMPLICATIONS, SO THAT THEY CAN BE BETTER MANAGED OR EVEN PREVENTED. DRIVING RESEARCH TO ADDRESS UNMET MEDICAL NEEDS LLS CONTINUES TO SOLICIT AND SUPPORT RESEARCH FOCUSED ON IMPROVING BLOOD CANCER PATIENTS' QUALITY OF LIFE AFTER TODAY'S CURATIVE THERAPIES. ALSO IN 2018, FOR THE SEVENTH YEAR, LLS ACTIVELY RECRUITED RESEARCH PROPOSALS IN SIX OTHER UNDERDEVELOPED RESEARCH AREAS IN WHICH PROGRESS IS LIKELY TO IMPROVE OUTCOMES FOR PATIENTS WITH PARTICULARLY URGENT NEEDS. NEW RESEARCH IS FOCUSED ON: - DEVELOPMENT OF NOVEL THERAPEUTIC STRATEGIES FOR PATIENTS WITH NON- CUTANEOUS T-CELL LYMPHOPROLIFERATIVE DISORDERS - DEVELOP NOVEL TARGETED THERAPIES FOR CLL PATIENTS, WITH REAL CURATIVE POTENTIAL - DEVELOP NOVEL TREATMENT STRATEGIES FOR MDS AND AML PATIENTS - DEVELOP NOVEL TARGETED THERAPIES FOR PATIENTS WITH HIGH-RISK MYELOMA - DEVELOPMENT OF NEW-TARGETED THERAPIES FO

B) PATIENT & COMMUNITY SERVICES SUPPORT SERVICES ARE PROVIDED BY PROFESSIONALS OR RIGOROUSLY TRAINED PEER VOLUNTEERS. ALL RESOURCES ARE PROVIDED THROUGH A VARIETY OF MEDIA - PRINT, ONLINE, BY PHONE, AND FACE-TO-FACE IN COMMUNITIES. A NUMBER OF RESOURCES ARE AVAILABLE IN SPANISH FOR PATIENTS, CAREGIVERS AND HEALTHCARE PROFESSIONALS. PRINT PUBLICATIONS: AN EXTENSIVE CATALOG OF EDUCATION MATERIALS IS OFFERED FREE-OF-CHARGE TO PATIENTS AND HEALTHCARE PROFESSIONALS. EACH YEAR, LLS DISTRIBUTES DISEASE AND SUPPORT BOOKLETS AND FACT SHEETS THROUGH THE INFORMATION RESOURCE CENTER, LLS WEBSITE AND LLS CHAPTERS. EACH YEAR, LLS PUBLISHES AN ANNUAL COMPILATION OF DATA AVAILABLE FOR BLOOD CANCERS, INCLUDING THE ESTIMATED NUMBERS OF NEW BLOOD CANCER CASES AND DEATHS, THE MOST RECENT STATISTICS AVAILABLE FOR INCIDENCE, MORTALITY AND SURVIVAL. IN 2020, 615,299 FREE PRINTED DISEASE AND SUPPORT BOOKLETS AND 12,296 FACT SHEETS WERE ORDERED. ADDITIONALLY, THERE WERE 131,924 PAGE VIEWS OF THESE BOOKLETS AND FACT SHEETS ON THE LLS WEBSITE. EDUCATION MATERIALS ARE AVAILABLE TO DOWNLOAD OR ORDER AT WWW.LLS.ORG/BOOKLETS. MANY MATERIALS ARE AVAILABLE IN ENGLISH, SPANISH AND FRENCH, AND SELECT MATERIALS ARE AVAILABLE IN ADDITIONAL LANGUAGES. FINANCIAL ASSISTANCE IN 2020, A COMBINED 142,351,684 WAS DISBURSED TO PATIENTS THROUGH THE CO- PAY ASSISTANCE PROGRAM (131,293,984), THE LLS SUSAN LANG PATIENT TRAVEL ASSISTANCE PROGRAM (2,667,500), THE LLS URGENT NEED PROGRAM (1,833,500), LLS PATIENT AID PROGRAM (1,722,200), AND THE COVID-19 PATIENT FINANCIAL AID PROGRAM (4,834,500). CO-PAY ASSISTANCE PROGRAM THE CO-PAY ASSISTANCE PROGRAM SUPPORTS QUALIFYING BLOOD CANCER PATIENTS MEET THEIR HEALTH INSURANCE OR MEDICARE PLAN PART B OR D PREMIUMS OR CO- PAYMENT OBLIGATIONS RELATED TO TREATING THEIR BLOOD CANCER DIAGNOSIS. PATIENTS WITH PRESCRIPTION DRUG COVERAGE, MEDICARE BENEFICIARIES UNDER MEDICARE PART B AND/OR MEDICARE PART D, MEDICARE SUPPLEMENTARY HEALTH INSURANCE OR MEDICARE ADVANTAGE SHOULD CHECK WITH LLS TO SEE IF THEY MEET ELIGIBILITY REQUIREMENTS TO RECEIVE FINANCIAL SUPPORT. CO-PAY ASSISTANCE IS SUBJECT TO FUNDING AVAILABILITY BY SPECIFIC BLOOD CANCER DIAGNOSIS. IN 2020, 131,293,984 WAS PROVIDED TO 22,253 PATIENTS THROUGH THE LLS CO-PAY ASSISTANCE PROGRAM. SUSAN LANG PAY-IT-FORWARD PATIENT TRAVEL ASSISTANCE PROGRAM THE SUSAN LANG PAY-IT-FORWARD PATIENT TRAVEL ASSISTANCE PROGRAM SUPPORTS QUALIFYING BLOOD CANCER PATIENTS WITH TRAVEL AND LODGING EXPENSES RELATED TO TREATING THEIR BLOOD CANCER DIAGNOSIS. TRAVEL ASSISTANCE IS SUBJECT TO FUNDING AVAILABILITY. IN 2020, 2,667,500 WAS PROVIDED TO 5,335 PATIENTS THROUGH THE LLS SUSAN LANG TRAVEL PROGRAM. URGENT NEED PROGRAM THE URGENT NEED PROGRAM WAS ESTABLISHED TO HELP PEDIATRIC AND YOUNG ADULT BLOOD CANCER PATIENTS, OR ADULT BLOOD CANCER PATIENTS ENROLLED IN CLINICAL TRIALS, WHO ARE IN ACUTE FINANCIAL NEED. THE PROGRAM PROVIDES ELIGIBLE PATIENTS ASSISTANCE FOR NON-MEDICAL EXPENSES INCLUDING RENT, MORTGAGE, LODGING, UTILITIES, CHILDCARE, ELDER CARE, FOOD, TRANSPORTATION, CAR REPAIR, CAR INSURANCE, PHONE SERVICE, AND ACUTE DENTAL WORK RELATED TO TREATMENT. IN 2020, 1,833,500 WAS PROVIDED TO 3,667 PATIENTS THROUGH THE LLS URGENT NEED PROGRAM. PATIENT AID PROGRAM THE PATIENT AID PROGRAM PROVIDES FINANCIAL ASSISTANCE TO BLOOD CANCER PATIENTS. ELIGIBLE PATIENTS WILL RECEIVE A ONE-TIME 100 STIPEND TO HELP OFFSET EXPENSES. IN 2020, 1,722,200 WAS PROVIDED TO 17,222 PATIENTS THROUGH THE LLS PATIENT AID PROGRAM. LLS COVID-19 PATIENT FINANCIAL AID PROGRAM LLS ESTABLISHED THE LLS COVID-19 PATIENT FINANCIAL AID PROGRAM TO HELP ELIGIBLE BLOOD CANCER PATIENTS EXPERIENCING FINANCIAL HARDSHIP DUE TO THE PANDEMIC. ELIGIBLE PATIENTS WILL RECEIVED A ONE-TIME 250 STIPEND TO HELP OFFSET EXPENSES. IN 2020, 4,834,500 WAS PROVIDED TO 19,338 PATIENTS THROUGH THE COVID-19 PATIENT FINANCIAL AID PROGRAM. COMMUNITY PROGRAMS SERVICES ARE PROVIDED IN COMMUNITIES TO PATIENTS AND THEIR FAMILIES, CAREGIVERS AND HEALTHCARE PROFESSIONALS BY EDUCATION & SERVICES STAFF AND TRAINED VOLUNTEERS WHO HAVE SPECIFIC SUPPORT AND OUTREACH ROLES. STAFF ARE HEALTHCARE AND ALLIED HEALTHCARE PROFESSIONALS, OFTEN WITH A BACKGROUND IN ONCOLOGY NURSING, PUBLIC HEALTH OR SOCIAL WORK; VOLUNTEERS ARE TYPICALLY PATIENTS OR CAREGIVERS WHO UNDERGO RIGOROUS BACKGROUND CHECKS AND TRAINING. STAFF AND VOLUNTEERS SERVE AS LIAISONS WITH COMMUNITY AND REGIONAL ONCOLOGY/HEMATOLOGY HEALTHCARE PROFESSIONALS AND TREATMENT CENTERS, AND PROVIDE COMMUNITY-BASED OUTREACH, EDUCATION, AND SUPPORT IN A VARIETY OF FORMS. REGIONAL BLOOD CANCER CONFERENCES: LLS WORKS TO ELEVATE OUR VISIBILITY IN COMMUNITIES WE SERVE BY HOSTING LARGER-SCALE CONFERENCES, GEARED FOR PATIENTS, CAREGIVERS AND HEALTHCARE PROFESSIONALS. THESE EVENTS ARE A CATALYST FOR BRINGING MANY DEDICATED PEOPLE TOGETHER TO FOCUS ON BLOOD CANCER AWARENESS, INFORMATION AND THE LATEST ADVANCES IN MEDICAL SCIENCE. THEY ARE DESIGNED FOR PATIENTS AND CAREGIVERS BUT ARE ATTENDED BY SOME LOCAL HEALTHCARE PROFESSIONALS (NURSES AND SOCIAL WORKERS) AS WELL; THIS YEAR, MOST WERE IN-PERSON BUT ONE WAS VIRTUAL DUE TO COVID-19. IN 2020, EIGHT BCC CONFERENCES WERE HELD WITH 4,065 ATTENDEES. LLS COMMUNITY THE ONLINE "LLS COMMUNITY" WAS LAUNCHED ON FEBRUARY 1, 2016 TO HONOR THE MEMORY OF MICHAEL GARIL, WHO WAS DIAGNOSED WITH ALL IN 1974 AT THE AGE OF SEVEN. IT WAS DESIGNED TO PROVIDE A WAY FOR PATIENTS AND CAREGIVERS TO: 1) BECOME PART OF A SOCIAL NETWORK TO CONNECT WITH PATIENTS AND CAREGIVERS IN SIMILAR SITUATIONS AND BECOME EMPOWERED; 2) PROVIDE INFORMATION ABOUT ONESELF AND ONE'S DISEASE, TO BECOME PART OF THE RESEARCH TO CURE BLOOD CANCERS; AND 3) GAIN THE LATEST INFORMATION ABOUT ONE'S DISEASE, LEARN ABOUT SURVIVORSHIP ISSUES, AND ABOUT CLINICAL TRIALS. BY THE END OF FY 2020, THERE WERE APPROXIMATELY 75,472 COMMENTS POSTED BY USERS. FAMILY SUPPORT GROUPS: THROUGHOUT THE US, IN 2020 LLS SUPPORTED OR HOSTED 127 FAMILY SUPPORT GROUPS FOR PATIENTS AND THEIR FAMILIES. GROUPS ARE GUIDED BY ONCOLOGY HEALTH PROFESSIONALS, PROVIDING INFORMATION AND SUPPORT AND ENCOURAGING GREATER COMMUNICATION AMONG PATIENTS, FAMILIES, FRIENDS AND HEALTHCARE PROFESSIONALS. LLS SUPPORT GROUPS ARE THE PERFECT PLACE TO TALK WITH OTHER PEOPLE AFFECTED BY BLOOD CANCERS, INCLUDING PATIENTS, FAMILY MEMBERS AND CAREGIVERS. THE GROUPS PROVIDE MUTUAL SUPPORT AND OFFER THE OPPORTUNITY TO DISCUSS ANXIETIES AND CONCERNS WITH OTHERS WHO SHARE THE SAME EXPERIENCES. THIS SHARING STRENGTHENS THE FAMILY BOND AND ENHANCES EVERYONE'S ABILITY TO COPE WITH CANCER. IN ADDITION, LLS ALSO HOSTED 7 ONLINE NATIONAL CHAT GROUPS - I.E., VIRTUAL SUPPORT GROUPS - THAT ARE PROFESSIONALLY MODERATED. IN FY 2020, 5,246 INDIVIDUALS PARTICIPATED IN THESE CHATS. PATTI ROBINSON KAUFMANN FIRST CONNECTION PROGRAM: FIRST CONNECTION IS A PROGRAM THAT LINKS NEWLY DIAGNOSED PATIENTS AND CAREGIVERS TO A PEER VOLUNTEER WHO HAS EXPERIENCED A SIMILAR DIAGNOSIS. A TRAINED PATIENT/CAREGIVER- VOLUNTEER CURRENTLY IN REMISSION CONTACTS THE PATIENT/CAREGIVER TO SHARE INFORMATION AND SUPPORT. THIS PROGRAM IS AVAILABLE THROUGH LLS CHAPTERS; REFERRAL IS ALSO PROVIDED BY LLS'S INFORMATION RESOURCE CENTER. -OVER 1,700 FIRST CONNECTIONS WERE MADE ACROSS THE US IN FY 2020.

C) PUBLIC HEALTH EDUCATION: INFORMATION AND EDUCATION. PAYING FOR MEDICAL CARE, MAKING TREATMENT CHOICES, COMMUNICATING WITH HEALTHCARE PROVIDERS, FAMILY MEMBERS AND FRIENDS-THESE ARE SOME OF THE STRESSES THAT COME WITH A CANCER DIAGNOSIS. LLS'S INFORMATION SPECIALISTS ARE HIGHLY TRAINED ONCOLOGY SOCIAL WORKERS, NURSES AND HEALTH EDUCATORS WHO PROVIDE HELP WITH DISEASE, TREATMENT AND CLINICAL TRIAL INFORMATION AND SUPPORT. INFORMATION SPECIALISTS MAY ALSO REFER PATIENTS AND CAREGIVERS TO A NURSE IN THE CLINICAL TRIAL SUPPORT CENTER (CTSC). THE NURSES IN THE CTSC HAVE EXPERTISE IN THE BLOOD CANCERS AND PROVIDE PATIENTS AND THEIR CAREGIVERS WITH COMPREHENSIVE NAVIGATION TO FIND AND ENROLL IN AN APPROPRIATE CLINICAL TRIAL. AS PART OF THIS PROCESS, THE NURSES WORK CLOSELY WITH INFORMATION SPECIALISTS TO ADDRESS RESOURCE BARRIERS TO CLINICAL TRIAL ENROLLMENT. PATIENTS, FAMILIES AND HEALTHCARE PROFESSIONALS MAY SPEAK TO AN INFORMATION SPECIALIST AT (800) 955-4572 MONDAY THROUGH FRIDAY, 9 A.M. TO 9 P.M., ET, EMAIL [email protected] OR CHAT ONE-ON-ONE VIA THE LLS WEBSITE. THE INFORMATION RESOURCE CENTER OFFERS TRANSLATION SERVICES IN MORE THAN 165 LANGUAGES. IN FY 2020: - 25,202 INQUIRIES WERE MADE TO OUR INFORMATION SPECIALISTS. - 14,580 HOUSEHOLDS RECEIVED INFORMATION AND/OR SUPPORT FROM INFORMATION SPECIALISTS VIA EMAILS, PHONE, AND ANSWER CHATS. -779 PATIENTS WORKED WITH A NURSE IN THE CLINICAL TRIAL SUPPORT CENTER TO RECEIVE COMPREHENSIVE ASSISTANCE WITH CLINICAL TRIAL ENROLLMENT; OVER 20% OF PATIENTS ASSISTED ENROLLED ON A CLINICAL TRIAL. LLS OFFERS PATIENTS AND CAREGIVERS FREE ONE-ON-ONE PHONE AND EMAIL CONSULTATIONS WITH A REGISTERED DIETITIAN WITH EXPERTISE IN ONCOLOGY NUTRITION. THIS SERVICE IS AVAILABLE TO ALL CANCER PATIENTS AND THEIR CAREGIVERS. IN FY 20 NEARLY 1,000 CONSULTATIONS WERE PROVIDED. THE LLS WEBSITE THE LLS WEBSITE, WWW.LLS.ORG, FULFILLS A WIDE VARIETY OF EDUCATION AND INFORMATION NEEDS. VISITORS CAN PERSONALIZE THEIR WEB PAGES TO THEIR LOCATION TO KEEP CURRENT WITH DISEASE-SPECIFIC UPDATES AND COMMUNITY EDUCATION AND SUPPORT ACTIVITIES. THE WEBSITE PROVIDES ACCESS TO LLS PROGRAMS AND SERVICES, INCLUDING FINANCIAL ASSISTANCE, INFORMATION SPECIALISTS, THE MOST CURRENT AND ACCURATE INFORMATION AND STATISTICS, WEEKLY FACILITATED ONLINE CHATS, NATIONAL TELEPHONE AND WEB EDUCATION PROGRAMS, PUBLICATIONS IN ENGLISH AND SPANISH (AND ADDITIONAL LANGUAGES FOR SELECT MATERIALS), PERSONALIZED CLINICAL TRIAL NAVIGATION BY A REGISTERED NURSE, PERSONALIZED NUTRITION CONSULTATIONS BY A REGISTERED DIETICIAN AND CONTINUING EDUCATION PROGRAMS FOR HEALTHCARE PROFESSIONALS. NATIONAL TELEPHONE/WEB EDUCATION PROGRAMS LLS CONDUCTS TELEPHONE-WEB EDUCATION PROGRAMS FOR PATIENTS, CAREGIVERS, SURVIVORS AND HEALTHCARE PROFESSIONALS ABOUT LEUKEMIA, LYMPHOMA, MYELOMA AND MYELODYSPLASTIC SYNDROMES AS WELL AS SURVIVORSHIP ISSUES. PROGRAM PARTICIPANTS ARE GIVEN THE OPPORTUNITY TO ASK QUESTIONS OF EXPERTS DURING THESE PROGRAMS. ALSO AVAILABLE THROUGH THE LLS WEBSITE ARE VIRTUAL LECTURES AND VIDEOS FEATURING DISEASE-SPECIFIC UPDATES AND INFORMATION ABOUT SUPPORT AND TREATMENT OPTIONS DELIVERED BY WORLD RENOWNED CLINICAL EXPERTS. UPCOMING AND ARCHIVED PROGRAMS ARE POSTED AT WWW.LLS.ORG/WEBCASTS. IN FY 2020: -LLS CONDUCTED 16 LIVE NATIONAL TELEPHONE-WEB EDUCATION PROGRAMS, WITH 12,713 PARTICIPANTS -THERE WERE 51,125 PAGE VIEWS FOR ARCHIVED WEB PROGRAMS; 25,367 VIRTUAL LECTURE VIEWS; 21,427 PODCAST DOWNLOADS; AND 60,234 VIDEO VIEWS.

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