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FTD Exists

Justin Peavey
Massachusetts

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About my Fundraiser


"Grief is like the ocean. It comes on waves, ebbing and flowing.
Sometimes the water is calm, and sometimes it is overwhelming.

All we can do is learn to swim."

Vicki Harrison -

 


FTD Exists, formerly known as Her Star, is a grassroots campaign aiming to raise awareness and funds for research to help find a cure for Frontotemporal Degeneration. This campaign was founded by Justin Peavey, a current college student at Suffolk University, in February 2012 while he was in the eighth grade. 

Justin's grandmother had been showing signs of dementia before he was even born. When he was a toddler, his grandmother started acting differently. She often walked long distances, had trouble formulating words, and had compromised memory. She was diagnosed with Alzheimer's disease in late 2003 and entered a nursing home the next year. After a very quick decline over the span of two years, she passed away at the age of 67. Justin was only eight years old at the time. It was not until years after her death that a neuropathology report stated that she was misdiagnosed. When neurologists in California and Boston, Massachusetts studied his grandmother's brain tissue, it was determined that she was suffering from FTD.

FTD is a rare form of dementia located in the frontal and temporal lobes of the brain. The disease attacks a person's ability to make judgments, express emotions, speak, move, and also robs the people of their memory and personal individuality. It is very similar to Alzheimer's and is extremely often misdiagnosed. It is a fatal disease that has no treatments or cures.


In 2007, a year after his grandmother's death, Justin met his grandmother's sister, Betty. Betty was showing very similar symptoms that became so extreme that they were jeopardizing her life. Betty met the same fate as her sister two years later, also a result of FTD.

For a while, dementia was not a concern for Justin. He knew it was in his grandmother's family, and also learned that his great-grandmother died of dementia in the 1970s, as well as many of his grandmother's sisters. 

In 2011, his mother and her siblings noticed that their eldest brother Danny was acting strangely. Danny went to a highly acclaimed dementia unit at Massachusetts General Hospital and received a clinical diagnosis of FTD that fall. Due to the severe family history, Danny underwent tests to see if there was a genetic marker that could predict the development of the disease. He tested positive for a mutated chromosome that creates a protein called tau which, when accumulated in the brain, causes dementias such as Alzheimer's and FTD. Because of this discovery, the rest of Danny's siblings were at risk of having inherited this genetic mutation from their mother.

This information has deeply troubled the family, but some of the siblings decided to undergo genetic testing to see if they had inherited the mutation. One of those siblings was Justin's mother, Kathy. To Kathy and her family's dismay, they received the news in March 2012 that she had in fact inherited the mutated gene linked to FTD. This means that Kathy has a 95% chance of developing the disease, and her children have a 50% chance of having inherited it themselves.

Justin's response was to take action. As someone who had seen FTD take two family members before, he knew how heart-wrenching and difficult it is. Now the disease was closing in on the people closest to him, as well as himself. He refused to sit idly by. In 2012, he arranged with his middle school principal to organize a fundraising event. He put together a multimedia presentation, with the assistance of The Association for Frontotemporal Degeneration (AFTD), and traveled from classroom to classroom sharing his story. His mother also came in for some of the presentations to share her experiences. He urged the students to attend the upcoming school dance, where the cost of admission would be donated to the AFTD.

From then on, Justin continued planning bigger events. He launched his online campaign through the AFTD, made public appearances in churches, schools, and shops in his community, and even had his story featured multiple times in a local newspaper. His biggest and most recent fundraising event took place in August 2015, where he directed an all-teen benefit production of Legally Blonde: The Musical. A portion of the proceeds from ticket sales was donated to the AFTD.

Raising money is not Justin's only priority with his campaign. He is aware that FTD is a rare disease and is even more rarely known. His grandmother had been misdiagnosed twice before her neuropathology report was released. Doctors insisted it was Alzheimer's or Lewy Body dementia, two more common related disorders. For Justin, ensuring a sense of awareness of the disease is just as important as funding research.

Justin's involvement with the AFTD has not been scarce. He corresponded with many different marketing advisors and board members gaining information about FTD and proper materials for his fundraising events. He also has played parts in the youth-based division, sharing his story for a back-to-school campaign, and even having a hand in the development of the AFTD Kids and Teens Website, which is aimed towards youth in FTD families.

After being dormant for over a year, Justin has relaunched his campaign under a new name and is currently planning public appearances, presentations, and fundraising events in the greater Boston area. He hopes that his story will compel others to spread the word about the existence of FTD, share his family's experience with the disease, and take the time to donate through his campaign to The Association for Frontotemporal Degeneration for research and drug discovery. He would like to thank everyone in advance for the support of families like his across the world who are facing similar problems.

This campaign was founded in memory of his Justin's grandmother Helen, Aunt Betty, and Uncle Danny, and continues to operate in honor of his direct and extended family.


For more information on FTD, visit http://www.theaftd.org/

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