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The Association for Frontotemporal Degeneration

AKA  AFTD
Radnor, PA
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

The Association for Frontotemporal Degeneration
Also Known As: AFTD
Physical Address: Radnor, PA 19087 
EIN: 41-2073220
Web URL: www.theaftd.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G01 Alliance/Advocacy Organizations
H Medical Research
H01 Alliance/Advocacy Organizations
G Disease, Disorders, Medical Disciplines
G48 Brain Disorders
Ruling Year: 2004 
How This Organization Is Funded: Individuals-- - $1,106,322
Fundraisers-- - $284,056
Grants - $59,801


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Mission Statement

The Association for Frontotemporal Degeneration (AFTD) is a non-profit organization whose mission is to: Promote and fund research into finding the cause and cure for the frontotemporal dementias; Provide information, education, and support to persons diagnosed with frontotemporal dementias (FTD) and their families and caregivers; Educate physicians and allied health professionals about FTD and how to improve patient care; Bring about greater public awareness of the nature and prevalence of the Frontotemporal Dementias and the needs of those who are coping with them; Advocate with public officials and to promote public and private programs that provide appropriate, affordable and high-quality long-term health care and social services ; Facilitate the international exchange of ideas.

Legitimacy Information

This organization is registered with the IRS.

This organization is required to file an IRS Form 990 or 990-EZ.

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Annual Revenue & Expenses (GuideStar Exchange,
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March 2014)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: June 30, 2012

Total Revenue $1,495,030
Total Expenses $1,441,674

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March 2014)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: June 30, 2012

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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March 2014)

Susan Dickinson

Term:

Since Feb 2008

Profile:

Ms. Dickinson has worked with AFTD since its inception. For the first five years she consulted for the Association and developed its publications, fundraising materials and content for the organization's website. Before taking on the leadership of AFTD she consulted for several other rare disease organizations and worked in the clinic as a genetic counselor. Previously she served as Director of Foundation and Corporate Development at Fox Chase Cancer Center and a Senior Editor at the newspaper .Ms. Dickinson has a BA in Psychology and Biology from Swarthmore College, where she graduated Phi Beta Kappa. She earned her MS in Genetic Counseling from Arcadia University, where she graduated with honors.

Leadership Statement:

The driving force behind everything that AFTD does can be summed up in two words: Care and Cure.   The care side of what we do focuses on the immediate needs of our families—getting and sharing information about FTD, working with support groups to connect caregivers with one another and offering a HelpLine to answer questions are just a few examples of ways that we strive to achieve the “care” part of our mission.  The cure side is future-focused; we are working today to fund, promote and encourage tomorrow’s research into the causes, treatments and potential cure for FTD.  Scientific research, clinical trials and drug development all take time and money, and we recognize that we must strike a balance between providing today’s care and ensuring tomorrow’s cure. The unifying theme underlying both care and the cure is awareness.  Everything that we work toward, be it providing caregiver respite grants or a funding a pilot research grant, hinges on people knowing what FTD is.  Most people never heard of FTD until a friend or loved one received a diagnosis, which probably left more questions.  That is a scenario that must change if we want to succeed in achieving our mission.  Doctors must be educated about FTD for more accurate diagnoses.  Long-term facility staff must learn how the care for FTD patients is different than that of Alzheimer’s patients.  Researchers must know that studying FTD is vitally important to the future of potential treatments and a possible cure.  And extended families, neighbors and friends must understand that the disease is now doing the talking for our loved ones, and that a little compassion goes a long way for a family living with FTD.  2013 will be an exciting year for AFTD, as we work to build on momentum that is growing across all areas of our broad mission.  We encourage the engagement of partners both new and old to support this important work.

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March 2014)

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March 2014)

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Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in March 2014

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Programs

Program: FTD Drug Discovery (GuideStar Exchange,
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March 2014)

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 (GuideStar Exchange,
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March 2014)

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 (GuideStar Exchange,
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March 2014)

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 (GuideStar Exchange,
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March 2014)

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:Funding pilot research: in 2010 we are funding a $60,000 pilot study and the second year of the first AFTD Postdoctoral Fellowship.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. 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 (GuideStar Exchange,
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March 2014)

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. 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/newsroomIn 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.
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Impact Summary from the Nonprofit

In 2012-13 AFTD is: ·         Operating under newly revised bylaws, engaging in strategic recruitment for strong leadership at the Board level       ·         Evaluating and extending the long-term Strategic Plan that guides the organization       ·         Providing information and resources to a growing network of caregiver support groups across the US and Canada ·         Meeting steadily increasing demand for support and information for caregivers and patients via AFTD’s toll-free HelpLine and online info@ service. ·         Working with professionals and families to publish unique resources, such as What About the Kids? a guide for young families dealing with FTD and Understanding the Genetics of FTD.       ·         Educating professional staff at care facilities as to the needs of FTD patients and providing creative and practical insight into how these challenges can be addressed successfully—via the new Partners in FTD Care program. ·          Co-sponsoring the 8th International Conference on FTDs in Manchester, UK ·         Expanding our Scientific Director position to full-time to strengthen our entrepreneurial approach to driving FTD science forward ·         Taking ownership of the FTD Treatment Study Group, a collaborative effort among pharma, biotechs, academic scientists to speed the path from the laboratory to development of the first approved therapies for FTD ·         Hosting a meeting of 70 leaders from academia, pharma, biotech, NIH and the FDA to identify hurdles in the path to effective and efficient FTD clinical trials ·         Funding the development of FTD biomarkers, in partnership with the Alzheimer’s Drug Discovery Foundation, who match our dollars 2:1. Biomarkers are needed for accurate diagnosis during life and to measure progression of disease as well as therapeutic impact during a clinical trial ·         Investing in and expanding a volunteer network across the US and Canada ·         Engaging with a growing number of families who are joining The AFTD Team to host grassroots awareness and fundraising events.       ·         Advocating for our constituency in Washington to ensure their needs are addressed in the National Alzheimer’s Plan.       ·         Hosting our first fundraising event, in honor of AFTD’s 10th Anniversary ·         Participating in and responding to a growing number of FTD stories in the national press, signifying that our efforts to expand awareness of this rare disease is beginning to bear fruit.
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