THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION

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 EIGHT GRANTS DURING FY23, INCLUDING TWO PILOT GRANTS AWARDED THROUGH THE AFTD PATHWAYS FOR HOPE PILOT GRANT PROGRAM.AFTD DELIVERED ONE AWARD THROUGH THE ACCELERATING DRUG DISCOVERY PROGRAM IN COLLABORATION WITH ADDF. DR. JEFFREY ROTHSTEIN OF JOHNS HOPKINS UNIVERSITY AND HIS TEAM WILL USE THE AWARD TO EVALUATE A NOVEL THERAPEUTIC TO CORRECT A PROBLEM AT THE HEART OF FTD ASSOCIATED WITH THE ACCUMULATION OF THE PROTEIN TDP-43.(CONTINUTED IN SCHEDULE O)AFTD AWARDED TWO HOLLOWAY POSTDOCTORAL FELLOWSHIPS ONE TO A RESEARCHER WORKING ON A PROJECT TARGETING TDP-43 AGGREGATION IN THE BRAIN, THE OTHER TO A RESEARCHER WORKING TO DEVELOP AND EVALUATE AN INDIVIDUALIZED, VIRTUAL REALITY SOCIAL-COGNITION GAME TO DIFFERENTIATE PRESYMPTOMATIC FTD MUTATION CARRIERS FROM NON-CARRIERS. 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.IN FY23, 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. IN FY24, TWO AWARDS WERE GIVEN THROUGH THIS PROGRAM.AFTD CONTINUED TO SUPPORT THE FTD DISORDERS 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 FY24, 6,704 PEOPLE HAD JOINED THE REGISTRY.IN COLLABORATION WITH THE FTD DISORDERS REGISTRY, AFTD PRESENTED THREE PERSPECTIVES IN FTD RESEARCH WEBINARS ADDRESSING TOPICS SUCH AS CLINICAL TRIALS IN PROGRESSIVE SUPRANUCLEAR PALSY AND CORTICOBASAL SYNDROME, GENE THERAPY IN FTD, AND NAVIGATING THE SOCIAL AND LEGAL CHALLENGES OF FAMILIAL 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 3,927 HELPLINE INQUIRIES IN FY24 A 16 PERCENT INCREASE OVER FY23. AS OF JUNE 30, 2024, THERE ARE 104 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 84 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 753COMSTOCK GRANTS (TRAVEL, RESPITE, AND QUALITY OF LIFE GRANTS) TO FTD CAREGIVERS AND PERSONS DIAGNOSED. 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 2024 EDUCATION CONFERENCE, HELD IN PERSON IN HOUSTON AND ONLINE VIA LIVESTREAM, DREW 1,061 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 10 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.