With more than 9,000 people in the region diagnosed with Parkinson’s, a tiny not-for-profit group is garnering national attention.
At a recent reception hosted by Longboat Key residents Stan and Jo Rutstein, Stan Rutstein asked guests to raise their hands if they knew someone or had a family member affected by Parkinson’s disease.
Every hand in the room went up.
The event was a kickoff for the Neuro Challenge Foundation for Parkinson’s annual gala, “Cause 4 Hope,” scheduled for March 9 at Michael’s On East. The Rutsteins are chairs of the event.
Surely that contributed to the number of people close to the disease being in the room, but many of the guests at the event were introduced to the organization for the first time. It was striking to see so many people affected by this disease.
Parkinson’s disease is a progressive, degenerative brain disorder that affects nearly 1 million people in the U.S. and 10 million worldwide. Florida has the second-highest number of people in the U.S. with Parkinson’s — 64,000 — behind California — 85,100. And that number will grow because of Florida’s aging demographics.
According to Sarasota neurologist Dr. Dean Sutherland of First Physicians Group, in Sarasota, Manatee and Charlotte counties, there are 9,000 people currently diagnosed with Parkinson’s.
The main cause of Parkinson’s is a loss of neurons in the area of the brain called the substantia nigra, which produces dopamine, a chemical messenger that carries signals between brain cells. Dopamine allows smooth, coordinated function of the body’s muscles and movement. When about 80% of the dopamine-producing cells are damaged, the symptoms of Parkinson’s appear.
Man has been aware of Parkinson’s since it was first described in ancient Indian texts. It came to the forefront in the U.S. when actor Michael J. Fox disclosed his diagnosis 20 years ago. Since then, the Michael J. Fox Foundation for Parkinson’s Research has funded more than $800 million to speed a cure for Parkinson’s.
In Sarasota, Manatee, Charlotte and Pinellas counties, the Neuro Challenge Foundation has focused not on a cure, but on improving the quality of life of people with Parkinson’s and their caregivers.
Founded by Sutherland and his wife, Doreen, the organization celebrated the close of its 10th year last week at “Cause 4 Fashion: Toast to 10 Years” at the Van Wezel Performing Arts Hall (See pictures on Page 1-2 in Black Tie). With more than 300 people attending the sold-out event, Executive Director Robyn Faucy-Washington reported Neuro Challenge had served more than 2,700 people affected with Parkinson’s in 2018.
Neuro Challenge provides monthly education, therapeutic and support programs, including the Off-Key Chorale, a singing group in partnership with Key Chorale; PD in Motion, a dance class at Soul Studios; and many other exercise, wellness and support groups. The organization’s programs have expanded from four to more than 40 in five years.
Neuro Challenge also offers individualized care, advising Parkinson’s patients, their families and caregivers how to navigate the disease and what therapies and services are best suited at each stage. The demand for this advising has recently caused Neuro Challenge to add an additional care adviser.
The organization also devotes itself to continuous education for health professionals and the public via distinguished speaker events; an annual Parkinson’s Symposium in partnership with Sarasota Memorial Health Care System (see box); and the Parkinson’s EXPO, one of the largest, day-long educational events for the Parkinson’s community held in the U.S.
Remarkably, all of these services are provided free of charge — repeat: free of charge — to people with Parkinson’s, their caregivers and the medical community.
The EXPO deserves its own shout-out. Last year, its inaugural event drew 1,400 people from 17 states and 23 counties to Florida. The 2019 event will be moved from Robarts Arena to the Bradenton Area Convention Center in anticipation of increased attendance. When the Michael J. Fox Foundation learned of the EXPO’s attendance and success, it asked: “How did you do it?”
That’s a great question, considering how this organization of seven employees manages to provide all of its programs for free and with 82% of every dollar raised going directly to program services. Neuro Challenge’s annual budget is $716,000 with all funds coming from private foundations and individual donations.
It’s small, to be sure, but Neuro Challenge is delivering a mighty impact.
Not only is the Michael J. Fox Foundation taking notice of this organization, local residents are as well. My table mate at Cause 4 Fashion, Molly Schechter, leaned over and said to me, “Ten years ago, when Len (Schechter, her late husband) had Parkinson’s, there were never this many services.”
For those services, my family is grateful. Full disclosure: I serve on the Neuro Challenge Board of Directors, and my mother and vice president of our company has Parkinson’s. Thankfully, she is dealing with Parkinson’s with grace, optimism and a wicked sense of humor.
She’s our hero. Love you, Mom.
And Michael J. Fox better watch out.