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

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

Pathologists• National Adult Day Services Assn




AFTD Website

Collaborations with professionals:• Community Care facilities • Social Workers• Speech and Language Pathologists• National Adult Day Services Assn



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.

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

Documents

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