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AFTD Annual Meeting Salt Lake City, UT April 12, 2013

AFTD Annual Meeting Salt Lake City, UT April 12, 2013. 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

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AFTD Annual Meeting Salt Lake City, UT April 12, 2013

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  1. AFTD Annual Meeting Salt Lake City, UT April 12, 2013

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

  3. AFTD Mission • Research • Support • Education • Awareness • Advocacy • Facilitate the international exchange of ideas Spans “Care” and “The Cure”

  4. AFTD Growth 19,000

  5. AFTD Growth

  6. ExpendituresJan 2011 – June 2012

  7. AFTD Growth New This Year STAFF: 6.5 to 9 employees Volunteer Manager—Kerri Barthel, MSW Development & Marketing Asst—LizNeal Scientific Director—NadineTatton, PhD Expansion to FT position

  8. 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. 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 8th International FTD Meeting Meeting of 11 peer organizations

  10. 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 8th International FTD Meeting Meeting of 11 peer organizations ALS AssnC9orf 72 meeting

  11. 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. 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. 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. 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. 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. 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. Advocacy New This Year… • Meetings with Representatives in Wash DC • Build awareness, relationships • Advocate for research funding • Advocate for National FTD Week

  18. 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. 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. 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. AFTD and YOU! New This Year… Spreading Awareness With Love–February 2012, 2013 35 families 4 challenge grants More than $80,000 raised

  22. AFTD and YOU! New This Year… Spreading Awareness Food for Thought—October2013 Goal: Events in 50 states and 5 provinces!

  23. Looking Forward • We are building momentum! • Basic research advances • Clinical trials emerging • Education of healthcare professionals • Greater public awareness • Community expanding

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

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