THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION
Programs
Program 1 [2021]
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 FY21, INCLUDING TWO PILOT GRANTS AND THREE HOLLOWAY POSTDOCTORAL FELLOWSHIPS.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 $2.5 MILLION WERE PROVIDED TO TWO INVESTIGATORS. THEIR INDIVIDUAL PROJECTS WILL TEST POTENTIAL DISEASE-MODIFYING THERAPIES THAT CAN BE USED IN THE TREATMENT OF FTD AND RELATED DEMENTIAS. THROUGH THE DIAGNOSTICS ACCELERATOR PROGRAM, A COLLABORATION WITH THE ALZHEIMER'S DRUG DISCOVERY FOUNDATION, AFTD AWARDED A HARVARD MEDICAL SCHOOL RESEARCHER $572,678. THE RESEARCHER WILL LEAD HER TEAM IN DEVELOPING A BLOOD TEST TO MEASURE LEVELS OF TWO PROTEINS, CALLED TAU AND TDP-43, THAT CAN SIGNAL EARLY CHANGES IN THE BRAINS OF PEOPLE WHO WILL GO ON TO DEVELOP FTD. THE DIAGNOSTICS ACCELERATOR PROGRAM IS AN INITIATIVE DESIGNED TO ADVANCE THE SCIENCE OF BIOMARKERS THAT WILL ASSIST WITH DIAGNOSING AND TREATING ALZHEIMER'S DISEASE.AFTD DELIVERED THREE AWARDS TOTALING $600,000 THROUGH THE DRUG DISCOVERY PROGRAM IN COLLABORATION WITH ADDF. THE RECIPIENTS WILL STUDY THE EFFICACY OF COMPOUNDS THAT COULD PREVENT THE ACCUMULATION OF A PROTEIN LINKED TO FTD AND WORK ON DEVELOPING AN IMMUNOTHERAPY TREATMENT FOR THE MOST COMMON GENETIC MUTATION IN PEOPLE WITH FTD.IN MARCH, AFTD HOSTED AN EXTERNALLY LED PATIENT-FOCUSED DRUG DISCOVERY MEETING, GIVING PERSONS DIAGNOSED AND CURRENT AND FORMER CAREGIVERS A VALUABLE ONE-TIME OPPORTUNITY TO INFORM THE DEVELOPMENT OF FEDERAL REGULATORY PROCESSES FOR POTENTIAL FTD THERAPEUTICS. APPROXIMATELY 550 PEOPLE JOINED THE LIVESTREAM OF THE MEETING, WHICH WAS BROADCAST ENTIRELY ONLINE.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.GeographiesNot indicatedDatesJul 1, 2020 – Jun 30, 2021Source990No causes providedNo populations provided–$4.2MProgram 2 [2021]
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 2,383 HELPLINE CALLS AND EMAILS. AS OF JUNE 30, 2021, THERE ARE 101 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 79 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 303 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. AFTD'S 2021 EDUCATION CONFERENCE, WHICH WAS HELD ENTIRELY ONLINE, DREW MORE THAN 1,200 REGISTRANTS. 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 ADDITIONALLY OFFERED SIX EXPERT-LED EDUCATIONAL WEBINARS, ATTRACTING 2,816 VIEWERS, AND THREE ISSUES OF THE PARTNERS IN FTD CARE NEWSLETTER FOR HEALTH PROFESSIONALS AND FAMILIES.GeographiesNot indicatedDatesJul 1, 2020 – Jun 30, 2021Source990No causes providedNo populations provided–$1.2MProgram 3 [2021]
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.GeographiesNot indicatedDatesJul 1, 2020 – Jun 30, 2021Source990No causes providedNo populations provided–$1.1M
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