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 MULTIPLE GRANTS DURING FY22, INCLUDING TWO PILOT GRANTS.AFTD PROVIDED THREE AWARDS 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.THROUGH THE DIAGNOSTICS ACCELERATOR PROGRAM, A COLLABORATION WITH THE ALZHEIMER'S DRUG DISCOVERY FOUNDATION, AFTD GAVE TWO AWARDS.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 OCTOBER, AFTD PUBLISHED "FRONTOTEMPORAL DEGENERATION: A VOICE OF THE PATIENT REPORT," WHICH SUMMARIZES AND ANALYZES DATA AND PERSPECTIVES FROM MORE THAN 1,750 PEOPLE LIVING WITH FTD, CARE PARTNERS, CAREGIVERS, AND OTHER FAMILY MEMBERS. THE REPORT COMPRISES INFORMATION SHARED BY PARTICIPANTS IN THE AFTD-HOSTED EXTERNALLY LED PATIENT-FOCUSED DRUG DEVELOPMENT (EL-PFDD) MEETING, HELD IN MARCH 2021. IT ALSO INCLUDES DATA FROM THE PRE-MEETING FTD INSIGHTS SURVEY, CONDUCTED BY AFTD AND THE FTD DISORDERS REGISTRY.THE FTD TREATMENT STUDY GROUP MET FOR ITS BIANNUAL MEETING IN DECEMBER 2021. AFTD CONVENED ALMOST 200 PARTICIPANTS FROM ACADEMIC RESEARCH INSTITUTIONS, THE BIOPHARMACEUTICAL INDUSTRY, PEER NONPROFIT ADVOCACY ORGANIZATIONS, AND GOVERNMENT AGENCIES TO COLLABORATE ON WAYS TO ACCELERATE THE DEVELOPMENT OF EFFECTIVE FTD TREATMENTS IN A PRE-COMPETITIVE SPACE. THE HYBRID MEETING FEATURED PRESENTATIONS FROM SIX COMPANIES ON TRIAL DESIGNS THAT ARE ACTIVELY RECRUITING, DEMONSTRATING HOW FAR DRUG DEVELOPMENT HAS PROGRESSED IN THE DECADE SINCE THE FIRST FTSG MEETING IN 2011. IN MAY 2022, AFTD BOARD MEMBER KRISTIN HOLLOWAY HOSTED THE INAUGURAL HOLLOWAY SUMMIT IN MIAMI, BRINGING TOGETHER MORE THAN 50 INTERNATIONALLY RENOWNED LEADERS IN FTD SCIENCE, NEURODEGENERATIVE RESEARCH, AND DIGITAL TOOL DESIGN. ATTENDEES SHARED PROGRESS IN THE DEVELOPMENT OF TOOLS TO ASSESS FTD SYMPTOMS, FOCUSING ON EMERGING TECHNOLOGIES THAT ALLOW RESEARCHERS TO USE SMARTPHONES, WEARABLE TRACKERS, OR OTHER DEVICES TO REMOTELY GATHER DATA - KNOWN AS DIGITAL BIOMARKERS - FROM RESEARCH PARTICIPANTS. 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 2,325 HELPLINE CALLS AND EMAILS. AS OF JUNE 30, 2022, THERE ARE 93 AFTD-AFFILIATED SUPPORT GROUP FACILITATORS LEADING 72 GROUPS ACROSS THE UNITED STATES. AFTD AWARDED 446 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 2022 EDUCATION CONFERENCE, HELD IN PERSON IN BALTIMORE ONA ONLINE VIA LIVESTREAM, DREW MORE THAN 1,200 REGISTRANTS 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 SEVEN EXPERT-LED EDUCATIONAL WEBINARS, INCLUDING TWO WITH THE FTD DISORDERS REGISTRY AND ONE WEBINAR THAT OFFERED CONTINUING EDUCATION CREDITS TO VIEWERS. AFTD ALSO PUBLISHED TWO 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.