Ann Washington was joined by four of her children in a solemn journey from out-of-state to Marco Island to honor the memory of a loved one struck down by a rare and little-known neurodegenerative disease.
Joining them on a recent Saturday morning at Mackle Park were hundreds of others who came there for the 16th Annual CurePSP Awareness and Memorial Walk. Organized by the Southwest Florida PSP Support Group, the event benefits the national nonprofit CurePSP. The organization funds research, educates healthcare professionals, and provides programs and services to support PSP suffers and their families.
Progressive Supranuclear Palsy, PSP, is a progressive, incurable and difficult to diagnose brain disorder, similar to Alzheimer’s, Parkinson’s and Lou Gehrig’s diseases, that eventually leaves its victims wheelchair-bound or bedridden. According to CurePSP, it strikes five to six out of every 100,000 people. Only about one third of them receive the correct diagnosis because it’s often misdiagnosed as Parkinson’s or Alzheimer’s.
Washington, of St. Stephens Church, Va., lost her husband, Richard Washington, Jr., last May, four months before his 65th birthday. “It took us three years to find out what was wrong with him,” she said.
She was joined by her daughters Ashley, Kenia and Ann, and her son, Richard Washington III on what was their first trip to Marco for the Walk. As in the past, the event drew other people from outside the region, including Boston, Philadelphia, New York City and Wisconsin.
“I think it’s great,” said Ann Washington. “I wish I had known about it earlier. It’s a great cause and for people to be willing to take time out to come and walk, no matter how far away they live, it’s just great.”
Mitch Kanefsky, the Southwest Florida PSP Support Group’s co-facilitator, said it was hoped the Walk would generate at least $40,000 in donations from individuals and sponsors. He said the event is the largest CurePSP fundraising event in the United States, according to the national organization.
“I’m pleased and amazed,” Kanefsky said of the support shown by the walkers and financial contributors. “I’m so thankful for any support that we can get because these ‘prime-of-life’ diseases exist and they’re often misdiagnosed, so people have them and they may or may not know it. To have events such as this and our support groups really helps people go through the process of these diseases.”
The Walk included food, a silent auction, raffles and live music. The walkers were an all-ages mix of friends, family members and PSP sufferers who journeyed around the lake at Mackle Park.
Support Group’s facilitator Cindy MacDonald was moved by the turnout and the event’s impact on a human level.
“It’s not just the money,” she said. “It’s about bringing these people together that have these diseases. A lot of these people have traveled here who have no support group or any affiliation related to these diseases. So to bring them all together means a lot.”
Keith Wang was one of those people. The Naples resident has had PSP since 2008. “It’s really important,” he said softly about the support demonstrated by the Walk. He said it feels good to know that so many people care.
Wang and his wife Julie led this year’s Walk.
Their friends Walter and Alison Yang of Naples were also there.
“We saw Keith, who was a very lively, lovely person, just change,” Walter Yang said of Wang. “It’s really saddened us. We didn’t about know about this disease, which can be so cruel. So we feel we should show support and hopefully the Federal government will show some awareness and put more money into research so that we can find a cure for this disease.”
Richard Washington III came from his home in Philadelphia to honor his late father. He said events such as the walk are vitally important to raising PSP awareness.
“This is not a disease like breast cancer or heart disease, where you see these enormous efforts, where people are going to come and do walks all over the country and there are a lot of donations and support online,” he said. “This is a little-known disease and we really didn’t know about it until my father was diagnosed. So the more awareness you can bring to a cause and the more funds you can raise, that’s ultimately going to lead to a cure one day and that’s what this is all about.”
For more information, visit Curepsp.org, which includes a nationwide list of support groups. For information about the Southwest Florida PSP Support Group, call MacDonald at 239-353-3960 or Kanefsky at 239-248-1392.