Pine Richland Community Magazine – 2011
When Hayley Jameson’s father, Donald Jameson, was diagnosed with Frontotemporal Dementia (FTD), one of the many known forms of dementia, she was heartbroken.
“My parents are my best friends,” says the devoted daughter and advocate, “I see them every day.”
She had started to notice changes in her father about four years ago. After months and months of doctors’ appointments, visits to a psychiatrist and psychologist, and investigative research trying to determine what was wrong, her father received the FTD diagnosis.
“It was interesting from a family standpoint, because there has been no history of it [dementia]… that we know of,” Jameson says.
Through this experience, Jameson became frustrated with the lack of viable medical solutions available to treat her father’s condition and slow the progression of his dementia. There are a few drugs that have proven to be effective for Alzheimer’s patients, she explains, but even those do not help with the FTD form of dementia.
“Symptoms often are difficult to recognize and are not diagnosed early enough,” she says. “Getting the right diagnosis early on is imperative.”
This information, she is quick to point out, comes from a loving daughter, not a medical expert.
On a professional level, Jameson owns a placement agency, HDJ & Associates, Inc. At home, she is the mother of two and a dedicated caregiver to her father, trying – as often as she can – to provide relief for her mother.
“To watch the devastation that has occurred in our whole family is just tragic,” she says. “We were just really frustrated with the lack of viable options, and still are.”
That frustration motivated her to take action.
“It took a year for me to accept my father’s diagnosis before realizing there was no viable solution, so I thought, ‘let’s do something’ and took action to change the status quo.”
While there are a number of organizations that offer support and educational resources for patients who are suffering with dementia and their families, Jameson says there is a gap when it comes to medical answers.
So she decided to work to bridge that gap and established the Clear Thoughts Foundation to reach out nationally and internationally in support of drug discovery. All of the foundation’s founding members, including her brother, have first-hand experience with the devastation of this disease.
“You have no idea how devastatingly expensive it is to take a drug to market,” she says. “Researchers get stalled because of a lack of funding.”
Currently much of the National Institutes of Health research related to dementia focuses on basic research and biomarkers, Jameson explains. “That’s very worthy but it doesn’t produce drugs that end dementia or slow the progression of the disease.”
To support drug discovery and development, the foundation will accept applications and offer grants to those whom the medical review board deems most likely to come up with viable medical solutions, Jameson says.
Working as an incubator, the foundation has partnered with a local firm, Cognition Therapeutics, which already is involved with drug discovery for dementia. Two members of the company serve on the foundation’s board of directors.
The Clear Thoughts Foundation recently received its non-profit 501(c)(3) designation, a process that took more time than originally anticipated. And, Jameson says, the foundation has set forth aggressive fundraising goals.
“This diagnosis is horrific and my goal is to find a cure. Period.” In Jameson’s opinion, “As a society we are too accepting [of dementia]. We see it as part of getting older and we are losing generations of wisdom.”
