Program:
FTD Drug Discovery
- Budget:
-
$100,000
- Category:
-
Medical Research
- Population Served:
-
Adults
Program Description:
AFTD raises $100,000 each year for research grants to develop the first therapeutics for FTD. Our funds are matched 2:1 by our partners in this program, the Alzheimer's Drug Discovery Foundation--so every dollar we raise results in $3 for our drug discovery researchers. This year the Danis family issued a generous challenge, which increased our funding to $180,000; this year the program is also dedicated to development of biomarkers for FTD.
Program Long-Term Success:
We are working toward the day when FTD can be effectively treated, cured and prevented.
Program Short-Term Success:
AFTD is working with our partners in the research community to get the first potential drugs for FTD into clinical testing.
Program Success Monitored by:
Program Success Examples:
Program:
Caregiver Respite Grants
- Budget:
-
$45,000
- Category:
-
Health Care
- Population Served:
-
Adults
Program Description:
In 2009 AFTD started a Caregiver Respite Grant program, under which full-time, unpaid caregivers of FTD patients can apply for up to $500 to help arrange for patient care so they can get some respite time for themselves.
Program Long-Term Success:
Program Short-Term Success:
Program Success Monitored by:
The flood of caregiver requests in response to the announcement of this new program tells that this is a critical need. We are actively fundraising and hope to expand the program in future years.
Program Success Examples:
Program:
Support, Information and Education for Caregivers
- Budget:
-
$418,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Adults
Program Description:
AFTD hosts a toll-free Helpline and email address for patients and caregivers. We facilitate a growing network of caregivers support groups; we sponsor three telephone support groups for caregivers located in remote areas, including one for spouses of FTD patients who are also caring for school-age children. We also have a caregiver matching program, where two caregivers in the same geographic area can meet to provide each other support. We sponsor a growing number of regional caregiver conferences; we host and keep current an informative website to connect caregivers with the most up-to-date information and resources. We publish a newsletter 3 times a year and host a Facebook page where our patients and families can post comments.
Program Long-Term Success:
We envision a day when there is an FTD caregiver support group in every metropolitan area and any caregiver who wishes can get to an in-person support group or is matched with a "caregiver partner".
Program Short-Term Success:
The number of support groups in our network has grown by 50% over the past 2-3 years. The number of regional caregiver conferences doubled in 2009, from two to four. We created a new website in 2009 and expanded our newsletter to 12 pages.
Program Success Monitored by:
Number of caregivers reached; number of support groups in the network; number of caregiver conferences; number of caregiver matches; response time on patient and caregiver inquiries.
Program Success Examples:
In the Fall of 2009 AFTD will co-sponsor the first FTD Caregiver Conferences ever in Boston and New York. We anticipate that nearly 300 family and professional caregivers will come together for a day of education, information and support. This is an opportunity that the caregivers in these regions have never had before.
Program:
FTD Research
- Budget:
-
$419,000
- Category:
-
Medical Research
- Population Served:
-
Adults
Program Description:
Promoting and funding research to understand the biology of FTD and develop the first disease-modifying therapies for our patients is one of the greatest passions at AFTD. We employ a range of mechanisms to drive forward this aspect of our mission:<br />Funding pilot research: in 2010 we are funding a $60,000 pilot study and the second year of the first AFTD Postdoctoral Fellowship.<br />Funding collaborations: AFTD regularly sponsors workshops to bring together scientists and clinicians; in 2010 we co-hosted a meeting with NIH to bring together FTD researchers to design a national patient registry. <br />AFTD has also partnered with Indiana University to conduct research around the barriers to families' participating in research.
Program Long-Term Success:
We envision a day when: FTD is understood, effectively diagnosed, treated, cured and ultimately prevented.
Program Short-Term Success:
In 2009 we are funding more research than ever before, including the first Fellowship in FTD and the first Strategic Analysis of all FTD research funding internationally over the past decade.
Program Success Monitored by:
Amount of research funding awarded; workshops held; amount of money from other funders going toward FTD research.
Program Success Examples:
In 2009 30 different researchers applied for our $60,000 pilot grant--nearly three times the number of any previous year. These applications came from investigators in a growing number of disciplines, and they represent a growing diversity in scientific approaches.
Program:
Awareness and Advocacy
- Budget:
-
$216,250
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Adults
Program Description:
AFTD is working to promote awareness of FTD among healthcare professionals and the public at large. We also advocate for increased research funding and appropriate services for our patients. <br />AFTD has created and begun to populate a volunteer regional network across the US and Canada. Each of 7 US Regions and 7 Canadian Regions is led by a volunteer regional representative who is working to connect caregivers within their region with each other and with available resources.
Program Long-Term Success:
We are working for the day when all FTD patients and their families have access to services they require; when FTD can be accurately diagnosed, treated, cured and prevented; when there is public recognition of a diagnosis of FTD.
Program Short-Term Success:
In recent months FTD has been featured in several major media markets, on both TV and in print media. AFTD is working with CNN on a news piece to be shown on the cable network and each year many of our families across the country hold Tell 10 People Events in their local communities to raise money and awareness for FTD.
Program Success Monitored by:
Number of news features; number of Tell 10 People events; success in advocating for increased research dollars and appropriate services
Program Success Examples:
Please see the Newsroom on AFTD's website for examples of recent news coverage. http://www.ftd-picks.org/newsroom<br />In 2008 FTD was one of only 50 conditions included in the Social Security Administration's new Compassionate Allowances program, under which FTD patients are eligible for expedited review of their Disability application.