1. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org AFTD Annual Meeting Salt Lake City, UT April 12, 2013

2. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org AFTD Vision We envision a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented.

3. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org AFTD Mission Research Support Education Awareness Advocacy Facilitate the international exchange of ideas Spans “Care” and “The Cure”

4. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org AFTD Growth 19,000

5. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org AFTD Growth

6. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org Expenditures Jan 2011 – June 2012

7. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

8. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

9. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

10. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

11. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org Support New This Year… HelpLine: Toll-free or info@ 2012: 24% increase (128/mo) 2013: increase in demand continues 3 PT staff Quality assurance mechanisms FAQs Demographic and outcome data Satisfaction survey

12. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

13. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

14. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

15. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

16. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

17. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org Advocacy New This Year… Meetings with Representatives in Wash DC Build awareness, relationships Advocate for research funding Advocate for National FTD Week

18. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

19. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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)

20. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org 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

21. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org AFTD and YOU! New This Year… Spreading Awareness With Love– February 2012, 2013 35 families 4 challenge grants More than $80,000 raised

22. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org AFTD and YOU! New This Year… Spreading Awareness Food for Thought— October 2013 Goal: Events in 50 states and 5 provinces!

23. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org Looking Forward We are building momentum! Basic research advances Clinical trials emerging Education of healthcare professionals Greater public awareness Community expanding

24. HelpLine 866-507-7222  info@theaftd.org  www.theaftd.org Working together We envision a world where frontotemporal degeneration is understood, effectively diagnosed, treated, cured and ultimately prevented.