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Rare Disease Organization Launches Nationwide Awareness Campaign

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Friday, September 06, 2013

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PHILADELPHIA - The Association for Frontotemporal Degeneration (AFTD) will launch its first-ever "Food for Thought" campaign from September 29 – October 6 to raise awareness of frontotemporal degeneration (FTD). To date, 44 grassroots supporters of AFTD in 24 states and 3 Canadian provinces will host events involving food and FTD education in their hometowns in a concentrated effort to raise a collective voice about this little-known brain disease.

"With best estimates at 50,000-60,000 people affected in the United States, a family that receives a diagnosis of FTD can feel very isolated and alone," said AFTD Executive Director Susan Dickinson. "One of the goals of this campaign, in addition to raising awareness of this disease, is to create a real sense of community among the people and families facing FTD, regardless of their location."

FTD is a neurodegenerative brain disease that strikes in a person's 40s-60s and affects the frontal and temporal lobes. It can affect a person's ability to speak, to the point that they become mute. It can affect a person's behavior--eating off strangers' plates, making inappropriate sexual advances, developing a voracious appetite for sweets, experiencing a drastic change in personality, becoming apathetic and speaking in repetitive phrases are a just a few examples. It can affect a person's ability to move—people often fall or are confined to a bed or wheelchair because of muscle issues akin to ALS or Parkinson's disease. At its cruelest, FTD is a combination of these symptoms, and the disease seems to affect each person in a different way. There is no treatment or cure for FTD at this time.

AFTD also hopes to get a formal resolution for an FTD Awareness Week passed through Congress.

"When enough people raise their voices about this disease, it leads to funding for research and improved care for our patients and caregivers," said Dickinson. "A nationally recognized week for FTD would shine a spotlight on these efforts."

A map and details regarding Food for Thought events can be found on AFTD's fundraising Facebook page:

For information on AFTD's Food for Thought campaign, visit For information on FTD, visit

The Association for Frontotemporal Degeneration (AFTD) is a not-for-profit organization created in 2002, originally named The Association for Frontotemporal Dementias, to advocate for more funding into the causes and treatments for frontotemporal degeneration (FTD), as well as to provide caregivers and patients with a central place to find information and support. Mounting evidence that these debilitating disorders are more prevalent than was originally thought and the limited information and support available for caregivers and families, along with the lack of funding for research, inspired a group of dedicated caregivers, clinicians, and researchers to create an organization to address these unmet needs.


Angie Maher,
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