In a March 1 interview with the Rochester, Minn.-based station KAAL-TV, AFTD Ambassador Deb Scharper noted that the public announcements of the FTD diagnoses of Wendy Williams and Bruce Willis have helped bring more attention to the disease.

The diagnoses of Williams and Willis conveyed to the public that FTD can strike while people are younger, often when raising families and managing a career. As Scharper told KAAL, greater FTD awareness could have better prepared her family better to handle the diagnosis of her husband, Tommy Nash.

“He could’ve had such a better life,” Scharper said. “We could’ve done some pre-planning. Gotten some more help in the home and maybe make his life not so stressful.”

Nash first began showing symptoms of FTD in 2011, starting a nearly five-year journey to diagnosis. Nash was only 44 when he was finally diagnosed with FTD. Scharper said that the diagnosis news was devastating and left her wondering what came next.

“That was 2015; things have come so far,” Scharper told KAAL. “What we were told in 2015 is to go home and get your affairs in order.”

In addition to a general lack of awareness, too many long-term care facilities suffer from a lack of “training…on this particular disease,” said Heike Schmolck, MD, a neurologist at MercyOne. “I wouldn’t say there are any specialized facilities for FTD, so [persons diagnosed with FTD] can be the odd ones out,” Dr. Schmolck added.

The Scharper and Nash families use their experiences to raise awareness of FTD and support AFTD’s mission working towards an FTD-free future. Deb Scharper is an AFTD Ambassador, a volunteer leader representing AFTD in Iowa, southern Minnesota, and Wisconsin’s LaCrosse region while advocating for Tommy.

On March 19, Scharper will join AFTD Director of Advocacy Meghan Buzby, MBA, Advocacy Manager Matt Sharp, MSS, and veteran health advocacy consultant Mike Splaine for the AFTD Webinar Making a Difference: Become an FTD Advocate. On March 23, Scharper is hosting an in-person AFTD Meet & Greet event in Spring Valley, Minn., to bring together those affected by FTD.