HelpLine   AFTD Annual Meeting Salt Lake City, UT April 12, 2013

HelpLine   AFTD Vision We envision a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented.

HelpLine   AFTD Mission Research Support Education Awareness Advocacy Facilitate the international exchange of ideas Spans “Care” and “The Cure”

HelpLine   AFTD Growth 19,000

HelpLine   AFTD Growth

HelpLine   Expenditures Jan 2011 – June 2012

HelpLine   AFTD Growth New This Year STAFF: 6.5 to 9 employees Volunteer Manager—Kerri Barthel, MSW Development & Marketing Asst—Liz Neal Scientific Director—Nadine Tatton, PhD Expansion to FT position

HelpLine   Building Collaborations New This Year… FTD Treatment Study Group Clinical Development in FTD meeting NIH, FDA, pharma, clinical experts Alzheimer’s & Dementia Oct 2012 AlzForum online—5-part series

HelpLine   Building Collaborations New This Year… FTD Treatment Study Group Clinical Development in FTD meeting NIH, FDA, pharma, clinical experts Alzheimer’s & Dementia Oct 2012 AlzForum online—5-part series 8 th International FTD Meeting Meeting of 11 peer organizations

HelpLine   Building Collaborations New This Year… FTD Treatment Study Group Clinical Development in FTD meeting NIH, FDA, pharma, clinical experts Alzheimer’s & Dementia Oct 2012 AlzForum online—5-part series 8 th International FTD Meeting Meeting of 11 peer organizations ALS AssnC9orf 72 meeting

HelpLine   Support New This Year… HelpLine: Toll-free or 2012: 24% increase (128/mo) 2013: increase in demand continues 3 PT staff Quality assurance mechanisms FAQs Demographic and outcome data Satisfaction survey

HelpLine   Support New This Year… Spring 2012: What About the Kids? Summer 2012: Understanding the Genetics of FTD with UPenn April 2013: A Guide for Managing a New Diagnosis

HelpLine   Professional Education New This Year… AFTD Website Collaborations with professionals: Community Care facilities Social Workers Speech and Language Pathologists National Adult Day Services Assn (NADSA) Gerontology nurses Dementia professionals APA May 2013

HelpLine   Professional Education New This Year… AFTD Website Collaborations with professionals: Community Care facilities Social Workers Speech and Language Pathologists National Adult Day Services Assn (NADSA) Gerontology nurses Dementia professionals APA May 2013

HelpLine   Professional Education New This Year… AFTD Website Collaborations with professionals: Community Care facilities Social Workers Speech and Language Pathologists National Adult Day Services Assn (NADSA) Gerontology nurses Dementia professionals APA May 2013

HelpLine   Professional Education New This Year… AFTD Website Collaborations with professionals: Community Care facilities Social Workers Speech and Language Pathologists National Adult Day Services Assn (NADSA) Gerontology nurses Dementia professionals APA May 2013

HelpLine   Advocacy New This Year… Meetings with Representatives in Wash DC Build awareness, relationships Advocate for research funding Advocate for National FTD Week

HelpLine   Advocacy New This Year… NAPA: National Alzheimer’s Plan Quarterly meetings —public statements Alzheimer’s Disease-Related Dementias: Research Challenges and Opportunities May 1-2 at NIH

HelpLine   AFTD and YOU! New This Year… Educating Professionals Community Care facilities Components: Introductory Packet Quarterly e-Newsletter with case studies Online Forum Volunteer Outreach initiative: 24 trained volunteers to 120 facilities by April 30 (10 states and 3 provinces)

HelpLine   AFTD and YOU! New This Year… Spreading Awareness NYT, LA Times— front pages Ralph Klein, former Premier of Alberta Katie Brandt, Rare Disease campaign It Is What It Is – full film online

HelpLine   AFTD and YOU! New This Year… Spreading Awareness With Love– February 2012, families 4 challenge grants More than $80,000 raised

HelpLine   AFTD and YOU! New This Year… Spreading Awareness Food for Thought— October 2013 Goal: Events in 50 states and 5 provinces!

HelpLine   Looking Forward We are building momentum! Basic research advances Clinical trials emerging Education of healthcare professionals Greater public awareness Community expanding

HelpLine   Working together We envision a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented.