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AFTD Annual Meeting Salt Lake City, UT April 12, 2013
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Transcript of AFTD Annual Meeting Salt Lake City, UT April 12, 2013
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
AFTD Annual MeetingSalt Lake City, UT
April 12, 2013
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
AFTD Vision
We envision a world where frontotemporal degeneration is
understood, effectively diagnosed, treated, cured and ultimately
prevented.
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
AFTD Mission
• Research• Support• Education• Awareness• Advocacy• Facilitate the international exchange
of ideas
Spans “Care” and “The Cure”
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
AFTD Growth
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
ExpendituresJan 2011 – June 2012
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
AFTD GrowthNew 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 866-507-7222 s [email protected] s www.theaftd.org
Building Collaborations New This Year…
FTD Treatment Study Group Clinical Development in FTD
meetingNIH, FDA, pharma, clinical
expertsAlzheimer’s & Dementia Oct
2012AlzForum online—5-part series
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
Building Collaborations New This Year…
FTD Treatment Study Group Clinical Development in FTD
meetingNIH, FDA, pharma, clinical
expertsAlzheimer’s & Dementia Oct
2012AlzForum online—5-part series
8th International FTD MeetingMeeting of 11 peer organizations
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
Building Collaborations New This Year…
FTD Treatment Study Group Clinical Development in FTD
meetingNIH, FDA, pharma, clinical
expertsAlzheimer’s & Dementia Oct
2012AlzForum online—5-part series
8th International FTD MeetingMeeting of 11 peer organizations
ALS Assn C9orf 72 meeting
HelpLine 866-507-7222 s [email protected] s 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
HelpLine 866-507-7222 s [email protected] s 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
HelpLine 866-507-7222 s [email protected] s 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
HelpLine 866-507-7222 s [email protected] s 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
HelpLine 866-507-7222 s [email protected] s 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
HelpLine 866-507-7222 s [email protected] s 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
HelpLine 866-507-7222 s [email protected] s 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
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
Advocacy New This Year…
NAPA: National Alzheimer’s Plan
Quarterly meetings —public statements
Alzheimer’s Disease-Related Dementias: Research Challenges and OpportunitiesMay 1-2 at NIH
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
AFTD and YOU! New This Year…
Educating Professionals
Community Care facilities Components:
Introductory Packet Quarterly e-Newsletter with case studiesOnline Forum
Volunteer Outreach initiative:24 trained volunteers to 120 facilities by
April 30(10 states and 3 provinces)
HelpLine 866-507-7222 s [email protected] s 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
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
AFTD and YOU! New This Year…
Spreading Awareness
With Love– February 2012, 201335 families4 challenge grants More than $80,000 raised
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
AFTD and YOU! New This Year…
Spreading Awareness
Food for Thought—October 2013
Goal: Events in 50 states and 5 provinces!
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
Looking Forward
We are building momentum!Basic research advancesClinical trials emergingEducation of healthcare professionalsGreater public awarenessCommunity expanding
HelpLine 866-507-7222 s [email protected] s www.theaftd.org
Working together
We envision a world where frontotemporal degeneration is
understood, effectively diagnosed, treated, cured and ultimately
prevented.