CHICAGO, Aug. 18, 2017 /PRNewswire-USNewswire/ -- A diagnosis of frontotemporal degeneration (FTD), an incurable degenerative brain disease, can be overwhelming. This Saturday, as runners converge for the Super Run 5K in Elk Grove, Illinois, one couple will be there to bring hope, awareness and determination to others, despite such challenges.
When Chicago'sFrank Callea was diagnosed with the primary progressive aphasia form of FTD at age 54, the multi-decade Chicago Tribune technology executive vowed to make a difference, even as he stepped away from his professional life.
Frank and his wife, Amy Bouschart-Callea, have since participated in FTD research with Northwestern Medicine, building on a long history volunteering at Northwestern Memorial Hospital.
On Saturday, more than 40 people – including the couple's friends and family members, as well as other volunteers and staff representing the Association for Frontotemporal Degeneration (AFTD) – will join the Super Run to raise FTD awareness. Frank and Amy will bring individual strengths: "Amy's got the words, and I've got the feet," he says.
While there currently is no cure, Frank adds, "it would be an improvement if there was more awareness, more knowledge and some advancements with treatment."
The couple have already raised more than $3,400 for AFTD's mission – helping those facing FTD today, and advancing research efforts to bring hope for the future. AFTD is an official charity partner of the Chicago Super Run.
"Frank and Amy's tireless work to raise awareness is crucial to helping the public, professionals and researchers to understand the impact that FTD has on their lives, the struggle to obtain necessary services, and the lack of available treatment options," said Darby J. Morhardt, Research Associate Professor at the Cognitive Neurology and Alzheimer's Disease Center (CNADC) at Northwestern University Feinberg School of Medicine.
An adept pianist, Frank now has time to teach lessons to neighbors, and keeps engaged in sports he enjoys. A speaker and coach, Amy focuses on creating empowering meaning in the midst of a disease most do not understand. Her philosophy: "Let's keep moving forward today to make a difference," she says.
Another goal for Frank this Saturday? To beat a time of 30 minutes.
About FTD: FTD is the leading cause of dementia for people under 60. Unlike Alzheimer's, FTD does not primarily impact memory; instead it affects behavior, movement, personality and communication.