ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION
2700 HORIZON DRIVE NO 120, KING OF PRUSSIA, PA 19406 www.theaftd.org

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Organizations Filed Purposes: PROMOTE AND FUND RESEARCH INTO DEVELOPING BETTER DIAGNOSTIC PROCESSES, THERAPIES, AND CURES FOR FRONTOTEMPORAL DEGENERATION (FTD); PROVIDE INFORMATION, EDUCATION, SUPPORT AND ADVOCACY TO PERSONS DIAGNOSED WITH FTD, THEIR FAMILIES AND CAREGIVERS; EDUCATE PHYSICIANS AND OTHER HEALTH PROFESSIONALS ABOUT FTD AND HOW TO IMPROVE PATIENT CARE; BRING ABOUT GREATER PUBLIC AWARENESS OF THE NATURE AND PREVALENCE OF FRONTOTEMPORAL DEGENERATION AND THE NEEDS OF THOSE WHO ARE COPING WITH IT; ADVOCATE WITH PUBLIC OFFICIALS TO PROMOTE PUBLIC AND PRIVATE PROGRAMS THAT PROVIDE APPROPRIATE, AFFORDABLE AND HIGH-QUALITY, LONG-TERM HEALTH CARE AND SOCIAL SERVICES.

RESEARCH - EACH YEAR AFTD INVESTS IN THE SCIENCE THAT WILL DRIVE DISCOVERY AND DEVELOPMENT OF ACCURATE DIAGNOSTICS AND THE FIRST THERAPEUTICS FOR FTD. TO THAT END, AFTD AWARDED MULTIPLE GRANTS DURING FY20, INCLUDING THREE PILOT GRANTS - ONE OF WHICH REPRESENTS $25,000 OF FOLLOW-ON FUNDING FOR A PREVIOUS RECIPIENT.THROUGH THE TREATFTD PROGRAM, A $10 MILLION MULTI-YEAR PARTNERSHIP BETWEEN AFTD AND ADDF DESIGNED TO BRING BOTH NOVEL AND REPURPOSED TREATMENTS INTO CLINICAL TESTING, AWARDS TOTALING $500,000 WERE PROVIDED TO TWO INVESTIGATORS. THEIR INDIVIDUAL PROJECTS WILL TEST POTENTIAL DISEASE-MODIFYING THERAPIES, ONE PHARMACOLOGICAL AND ONE NON-PHARMACOLOGICAL, THAT CAN BE USED IN THE TREATMENT OF FTD AND RELATED DEMENTIAS. AFTD RECENTLY JOINED WITH ADDF AND OTHER INVESTORS, SUCH AS THE GATES FOUNDATION AND JEFF BEZOS, IN THE DIAGNOSTICS ACCELERATOR PROGRAM, A COLLABORATION DESIGNED TO ADVANCE THE SCIENCE OF BIOMARKERS THAT WILL ASSIST WITH DIAGNOSING AND TREATING ALZHEIMER'S DISEASE, FTD AND RELATED DEMENTIAS. AFTD COMMITTED TO AN OVERALL INVESTMENT OF $2.5 MILLION TO THE MULTI-YEAR INITIATIVE, TO BE MATCHED BY THE DIAGNOSTICS ACCELERATOR INITIATIVE. AWARDS TO DATE TOTALING $1,666,000 WILL FUND TWO RESEARCH PROJECTS DESIGNED TO VALIDATE BIOMARKER TESTS TO DETERMINE OPTIMAL TREATMENT TIMES, AS WELL AS INFORM BETTER DIAGNOSTIC AND TREATMENT METRICS. IN A NEW STRATEGIC PARTNERSHIP, AFTD AND TARGET ALS ARE COMMITTING A TOTAL OF $5 MILLION FOR A MULTI-YEAR INITIATIVE TO FUND COLLABORATIVE RESEARCH PROJECTS THAT WILL BRING TOGETHER EXPERTS FROM THE BIOPHARMACEUTICAL INDUSTRY AND ACADEMIA TO DEVELOP DIAGNOSTIC TOOLS AND VALIDATE BIOMARKERS FOR POTENTIAL FTD TREATMENTS. IN THE FIRST YEAR OF THE INITIATIVE, WE COMMITTED TO PROVIDE MULTI-YEAR FUNDING TO SIX RESEARCH CONSORTIA INVESTIGATING MULTIPLE POTENTIAL FTD BIOMARKERS. IN 2019, AFTD AWARDED TWO RESEARCHERS FROM THE UNIVERSITY COLLEGE OF LONDON $1.1 MILLION FOR A 3-YEAR STUDY INVESTIGATING THE ROLE OF NEUROINFLAMMATION IN FTD TO DEVELOP A SURROGATE BIOMARKER THAT WILL HELP IMPROVE THE CHANCES OF EARLY DIAGNOSIS AND TO STUDY DISEASE PROGRESSION. THROUGH THE DRUG DISCOVERY PROGRAM IN COLLABORATION WITH ADDF, WE AWARDED FUNDING TO A RESEARCHER INVESTIGATING THE EFFICACY OF AN ANTIBODY INJECTION TO TREAT PROTEIN AGGREGRATION THAT LEADS TO NEURODEGENERATION.AFTD AWARDED $150,000 TO THE FTD DISORDER REGISTRY, AN ELECTRONIC DATABASE THAT COLLECTS INFORMATION ABOUT THE FTD EXPERIENCE FROM PERSONS DIAGNOSED AND FTD CARE PARTNERS. THIS ESSENTIAL SOURCE OF FIRST-HAND ACCOUNTS WILL HELP INFORM RESEARCHERS AND CLINICIANS, AND WILL SPUR INNOVATION THAT WILL LEAD TO BETTER DIAGNOSES AND THERAPIES FOR PEOPLE LIVING WITH FTD.

EDUCATION AND SUPPORTSUPPORT - AFTD UNDERSTANDS THE CHALLENGES THAT FTD PRESENTS TO PATIENTS AND THEIR FAMILIES, AND WORKS HARD TO DEVELOP UNIQUE RESOURCES AND INFORMATION THAT WILL IMPROVE QUALITY OF LIFE FOR THOSE LIVING WITH FTD. AFTD STAFF RESPONDED TO 2,546 HELPLINE CALLS AND EMAILS. WE EXPANDED OUR NETWORK OF AFFILIATED SUPPORT GROUPS; AS OF JUNE 30, 2020, THERE ARE 105 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 83 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 252 COMSTOCK GRANTS TO FTD CAREGIVERS AND PERSONS DIAGNOSED - A TOTAL THAT INCLUDES TRAVEL, RESPITE AND QUALITY OF LIFE GRANTS. EDUCATION AND INFORMATION-AFTD COLLABORATES WITH A GROWING NUMBER OF PARTNERS EACH YEAR TO EDUCATE HEALTHCARE PROFESSIONALS ABOUT FTD, WITH A GOAL OF SPEEDING OUR WAY TOWARD ACCURATE DIAGNOSIS AND EFFECTIVE DISEASE MANAGEMENT AND TREATMENT. THERE WERE 634 UNIQUE PARTICIPANTS WHO JOINED THE 2020 AFTD EDUCATION CONFERENCE: WEBINAR SERIES, A VIRTUAL EVENT HOSTING ONE HOUR-LONG WEBINAR A WEEK, FOR FIVE WEEKS. THE EPISODES FEATURED EXPERTS FAMILIAR WITH FTD AND THE AFTD COMMUNITY TO COMPREHENSIVELY DISCUSS CONTENT PERTINENT TO PEOPLE LIVING WITH OR AFFECTED BY FTD, AS WELL AS HEALTHCARE PROFESSIONALS SEEKING GREATER UNDERSTANDING OF THIS DISEASE. AFTD ADDITIONALLY OFFERED TWO EXPERT-LED WEBINARS AND THREE ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES. AFTD ALSO PUBLISHED A NEW 48-PAGE BOOKLET TO ASSIST INDIVIDUALS IN NAVIGATING GRIEF BROUGHT ON BY A DIAGNOSIS OF FTD.

ADVOCACY AND AWARENESS - OUR COMMUNITY IS LEADING THE WAY TO SEND THE MESSAGE THAT DEMENTIA IS A MULTI-FACETED DISEASE THAT CAN OCCUR AT A YOUNG AGE AND BEGIN WITH SYMPTOMS UNRELATED TO MEMORY. AFTD IS WORKING HARD TO ENSURE THAT THIS MESSAGE IS HEARD IN WASHINGTON DC AND OTHER SEATS OF POWER, WHERE DECISIONS ABOUT RESEARCH FUNDING AND SERVICES ARE MADE.

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