The Association For Frontotemporal Degeneration

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 NINE GRANTS DURING FY23, INCLUDING THREE PILOT GRANTS.THROUGH THE DIAGNOSTICS ACCELERATOR PROGRAM, A COLLABORATION WITH THE ALZHEIMER'S DRUG DISCOVERY FOUNDATION, AFTD GAVE ONE AWARD.AFTD DELIVERED TWO AWARDS THROUGH THE ACCELERATING DRUG DISCOVERY PROGRAM IN COLLABORATION WITH ADDF. AWARDEES IN THESE PROGRAMS WILL WORK TO DEVELOP A BLOOD-BASED ASSAY TO DETECT LEVELS OF SEVERAL BIOMARKERS INDICATING NEUROINFLAMMATION THAT IS LINKED TO FTD, AS WELL AS RESEARCH DRUGS DESIGNED TO PREVENT OR UNDO DISEASE-CAUSING CHANGES IN THE BRAIN. AFTD AWARDED TWO HOLLOWAY POSTDOCTORAL FELLOWSHIPS ONE TO A RESEARCHER WORKING ON NOVEL THERAPEUTICS TARGETING A COMMON FTD PATHOLOGY, THE OTHER TO A RESEARCHER DEVELOPING A VIRTUAL REALITY GAME DESIGNED TO BENEFIT THE SOCIAL COGNITION OF PEOPLE LIVING WITH FTD. AFTD ALSO AWARDED A CLINICAL RESEARCH TRAINING SCHOLARSHIP, FUNDED THROUGH THE GENEROUS SUPPORT OF THE HOLLOWAY FAMILY FUND, WITH ADDITIONAL SUPPORT FROM THE AMERICAN BRAIN FOUNDATION IN COLLABORATION WITH THE AMERICAN ACADEMY OF NEUROLOGY.BUILDING ON THE KNOWLEDGE THAT THE C9ORF72 MUTATION CAN CAUSE BOTH FTD AND ALS, AFTD PARTNERED WITH THE ALS ASSOCIATION TO LAUNCH THE DIGITAL ASSESSMENT TOOLS FOR FTD AND ALS AWARDS TO DRIVE PROGRESS IN COLLABORATIVE DIGITAL TOOL DEVELOPMENT AT THE INTERSECTION OF BOTH DISEASES. AFTD CONTINUED TO SUPPORT 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. AT THE END OF FY23, 6,081 PEOPLE HAD JOINED THE REGISTRY.IN COLLABORATION WITH THE FTD DISORDERS REGISTRY, AFTD PRESENTED THREE PERSPECTIVES IN FTD RESEARCH WEBINARS ADDRESSING TOPICS SUCH AS DIFFERENTIATING BETWEEN TYPES OF RESEARCH STUDIES, HOW FTD-FOCUSED THERAPEUTIC DEVELOPMENT HAS EVOLVED, THE CURRENT CLINICAL TRIAL LANDSCAPE, AND HOW PEOPLE CAN GET INVOLVED, AND WHAT TO CONSIDER WHEN THINKING ABOUT BRAIN DONATION AS PART OF THE FTD JOURNEY.

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 3,379 HELPLINE INQUIRIES IN FY23 - A 45 PERCENT INCREASE OVER FY22. AS OF JUNE 30, 2023, THERE ARE 104 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 77 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 748 COMSTOCK GRANTS (TRAVEL, RESPITE AND QUALITY OF LIFE GRANTS) TO FTD CAREGIVERS AND PERSONS DIAGNOSED - A 68 PERCENT INCREASE OVER THE PREVIOUS FISCAL YEAR. 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. AFTD'S 2023 EDUCATION CONFERENCE, HELD IN PERSON IN ST. LOUIS AND ONLINE VIA LIVESTREAM, DREW MORE THAN 900 ATTENDEES COMBINED. THE CONFERENCE 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 OFFERED SIX EXPERT-LED EDUCATIONAL WEBINARS, INCLUDING THREE WITH THE FTD DISORDERS REGISTRY AND FOUR WEBINARS THAT OFFERED CONTINUING EDUCATION CREDITS TO VIEWERS. AFTD ALSO PUBLISHED THREE ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES.

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.