Siblings’ Mission To Help Fight Dementia Becomes Clear
Bill Zlatos – Pittsburgh Tribune-Review – Thursday, December 9, 2010
Siblings’ mission to help becomes clear
Donald and Sandy Jameson met in third grade in Forest Hills, began dating in high school and have been madly in love for about a half-century.
For the past three years, Donald Jameson, 69, of Valencia has suffered from frontotemporal dementia, or FTD, a condition that robs him of his communication skills.
“It’s just a terrible disease,” said their daughter, Hayley Jameson, 42, of Wexford. “My mother is a broken woman. She’s alone and has never been alone. Even though my dad is physically here, he is not mentally here.”
Jameson and her brother Matt, 44, of Allison Park are fighting back. They created Clear Thoughts Foundation to raise money for screening and the discovery of drugs to treat FTD, Alzheimer’s and other forms of dementia.
Chuck McDevitt, spokesman for The Association for Frontotemporal Dementias, a Radnor-based group, called the creation of the foundation “tremendously generous and forward thinking.”
“It’s not uncommon for people to make donations in memory or in honor of a family member or friend with FTD. I wish it were more common because funding is so necessary for us to make advances in research.”
Although the cause is unknown, FTD results from a series of disorders in certain parts of the brain. Unlike Alzheimer’s, FTD causes a progressive decline in language and behavior, rather than memory loss.
McDevitt said an estimated 250,000 people in the United States have FTD. People between the ages of 45 and 65 are most likely to be affected.
So far, the foundation has raised $2,000, but Jameson hopes eventually to raise millions of dollars. The goal is to hold a fundraiser next fall and make a grant by the end of next year.
Clear Thoughts Foundation is different from other groups, Jameson said, because it is “laser-focused” on finding a cure, not on educating the public or doing advocacy.
“At the end of the day, no matter how many Kumbayas you say around the campfire, the disease is still awful, and I want to end the disease,” she said.
Among the early contributors to the foundation are her two children – Trent Napotnik, 9, and Chloe Napotnik, 7. They raised nearly $70 last summer from their lemonade stand.
Her children’s empathy for their grandfather lifted Jameson’s spirits.
She only has to remember the message that Trent scrawled in a picture of a Thanksgiving turkey he colored for school.
“I am thankful for medicine because my Pap is sick,” he wrote. “We need to find a cure. It will be better because then I can play with him, but he can only watch TV now. I love him so much. I feel bad.”
