HelpLine 866-507-7222 [email protected] 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


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”


AFTD Growth

19,000


AFTD Growth


ExpendituresJan 2011 – June 2012


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


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







8th International FTD MeetingMeeting of 11 peer organizations

ALS Assn C9orf 72 meeting


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


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


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



AFTD Website





AFTD Website

Collaborations with professionals:• Community Care facilities • Social Workers• Speech and Language

Pathologists• National Adult Day Services Assn




AFTD Website




Advocacy New This Year…

Meetings with Representatives in Wash DC

• Build awareness, relationships• Advocate for research funding• Advocate for National FTD Week


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


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)



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



Spreading Awareness

With Love– February 2012, 201335 families4 challenge grants More than $80,000 raised



Spreading Awareness

Food for Thought—October 2013

Goal: Events in 50 states and 5 provinces!


Looking Forward

We are building momentum!Basic research advancesClinical trials emergingEducation of healthcare professionalsGreater public awarenessCommunity expanding


Working together

We envision a world where frontotemporal degeneration is

understood, effectively diagnosed, treated, cured and ultimately

prevented.

Documents

HelpLine 866-507-7222 [email protected] AFTD Annual Meeting Salt Lake City, UT April 12, 2013