AFTD Annual Meeting White Plains, NY March 14, 2014
AFTD Vision We envision a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented.
AFTD Mission Research Support Education Awareness Advocacy Facilitate the international exchange of ideas Spans Care and The Cure
The AFTD Brand Values: Knowledge, Positive action, Collaboration, Respect, Dignity, Compassion Strategy: Be THE knowledge center for FTD and our community Form strategic partnerships Leverage our investment Informed by various perspectives of our community
The Hub of our Community Caregivers Clinicians Researchers AFTD Industry Government Persons Diagnosed
Increasing our Resources Note: July December 2013 are unaudited numbers
Investing in our Mission Expenditures July 2012 June 2013
Extending Our Reach 23,000
Helping More People Comstock Caregiver Grants Direct Assistance to individuals 90 respite grants 37 travel grants
Stimulating Research Interest More researchers with innovative ideas, quality science Wider representation of: institutions, countries, fields of expertise Drug Discovery - more ALS researchers, $425,000 awarded Postdoctoral Fellowship 28 candidates from 21 institutions Pilot Grants 42 applications (+ 100%)
2013: Forging New Partnerships To improve the lives of patients and families today To advance knowledge toward accurate diagnosis and the first therapeutics tomorrow
Engaging with New Partners Persons Diagnosed with FTD Breakout session 3 rd year in a row 2013: Phone support group 2014: Survey on needs
Engaging with New Partners Susan Grant 2013 Change Agent (PharmaVOICE 100) Joanne Douglass. Ph.D. 1 st person account of PPA in AJADD Howard Glick Blog in the National Library of Medicine
Improving Clinical Care Internet-based speech therapy: Improving quality of life and access to care Online web portal Video chat therapy sessions Personalized activities Emily Rogalski, Ph.D. AFTD 2013 Pilot Grant Awardee Improved mood, increased independence, enhanced quality of life
Educating Speech Professionals The Dr. Lawrence Albert Memorial Webinar Series on PPA 3 CEU accredited trainings ASHA conference Nov. 2013 Speech & Language pathologists: Understand PPA Improve treatment approaches
Educating Psychiatrists May 2013 Annual Conference Ted Huey, M.D. FTD: Improving the Family s Journey --Recognize possible FTD dx --Improved care after diagnosis Chiadi Onyike, M.D.
Creating New Research Tools FTD IPScell Consortium Joins ALS, Huntington s, Parkinson s Disease models available to all researchers
Creating an International Network Establishing Therapeutic Efficacy in Familial FTD Clinicians from 21 countries First international exchange on building clinical trials for familial FTD
Investing in the Future Catarina Silva, Ph.D. AFTD Postdoctoral Fellow 2013-2015 Harvard Medical School Todd Cohen, Ph.D. AFTD Postdoctoral Fellow 2009-2011 Assistant Professor, UNC-Chapel Hill
Advocating for Funding & Services National Alzheimer s Plan (NAPA) Federal Level: Quarterly: Council meetings in Washington D.C. May 2013: NIH Workshop to set research priorities for FTD, Lewy body, vascular dementias Feb 2014: Accepted for inclusion in the National Plan
Catalyst for Awareness Prime time Attention FTD: A Different Kind of Dementia June 13, 2013 Robert Bazell, NBC Chief Medical Correspondent
Catalyst for Awareness AFTD National Volunteer Network 8 Regional Volunteer Coordinators
Extending Our Reach AFTD National Volunteer Network 8 Regional Volunteer Coordinators 172 trained volunteers 17 different outreach projects Outreach to care facility staff (12 volunteers to 41 facilities) Advocate with state legislatures (3 states) AFTD State Guidance
FTD Awareness Week Sept 29 Oct 5, 2013 56 Food For Thought events 25 states 5 Canadian Provinces Raised > $50,000 Congressional Statement Web, paper, radio news coverage
FTD Awareness Week
FTD Awareness Week October 5 12, 2014 FTD Awareness Week Challenge: Event in Every State! Serve Some Food. Share Your Story. Spread the Word.
Building On Success Join AFTD! Fund research Join our trained volunteer corps Educate care facilities Host a Food For Thought Event Advocate in your State Speak in Washington D.C.
Let s Make It Happen! We envision a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented.