September 25, 2011 at 6:14 PM
MILLBURN, NJ - Over the past few months, Millburn and Short Hills have had their share of unusual events including Hurricane Irene, an earthquake, and massive flooding but most wondrous of all was an explosion of multi-colored bicycles that appeared throughout the township. Those bikes are the omnipresent symbol of the fourth annual Jake’s Ride for Dystonia Research. Township resident Jake Silverman is a 15-year-old Short Hills resident and sophomore at Millburn High School who was diagnosed with dystonia at the age of ten. He is the inspiration for this ride and his family, with the collaboration of more than 100 volunteers throughout the area, have raised as of today’s ride approximately $950,000 over the past four years. That money has been used to fund ten research grants of $65,000 each dedicated to finding better treatments and cures for this incurable disease. Jake’s Ride works under the umbrella of the Bachman-Strauss Dystonia & Parkinson Foundation.
Jake Silverman began experiencing spasms when he was in kindergarten. Fifty doctors in multiple specialties were unable to diagnose his condition. By the sixth grade, Jake was taking 30 pills a day, was wheel-chair bound, and was unable to attend the sixth grade. Finally, he was diagnosed at Mass General Hospital in Boston as having dystonia, which is a neurological movement disorder that results in uncontrollable and often painful muscle contracts in one or more parts of the body. Dystonia affects an estimated 500,000 people in North American. At 12-years-old, Jake underwent Deep Brain Stimulation (DBS) and surgeries to implant two electrodes in his brain and a battery in his chest. It took a year for these procedures to kick in according to Jake’s father Jeffrey who states that, three years later, Jake is “doing remarkably well.” Jake is treated at Mass General by neurologist and director of its Dystonia Department Nutan Sharma, M.D. who explained that the money raised through Jake’s Ride makes a huge difference to testing new ideas in treatment and to helping the next generation of doctors in understanding this disease. She also expressed that, unfortunately, Jake’s saga in failing to find a diagnosis for many years is not uncommon.
Jake was one of the 1,000 bike riders who chose among a one-mile, five mile, or ten-mile bicycle ride. But as Jake explained, just because he is “up doing stuff like riding my bike, I am not better. If the battery in my body were removed, my symptoms would recur.” Jake is a good student at Millburn High School and is assisted by a scribe who takes notes and by tutor Bunny Ucko who described Jake as being a great student and a terrific self-advocate.
The idea for Jake’s Ride was the fortuitous result of Jake’s parents, Nancy and Jeffrey Silverman meeting township resident David Gardner whose bike team had in the past raised money for the cause of multiple sclerosis. When the Silvermans told Gardner of Jake’s impending surgery and of the Bachman Strauss Foundation and its need for funds, Gardner decided to shift the focus of his efforts to dystonia research. He is now the founder and chairman of the Jake’s Ride committee which consists of twenty members, all local citizens. Nancy Silverman, a brander in her professional life, came up with the idea of the brightly colored bicycles that are placed strategically throughout the town. The bikes, no longer functional, are donated by the Millburn Township Sanitation Department.
Ride day began cloudy but at the nine o’clock ribbon cutting ceremony, the sun was shining bright. Brian Thompson, a news-breaking reporter for News 4 New York, emceed the event. The National Anthem was performed by Jake’s classmate Cameron Harris, who significantly, remembered all the words. The band British Invasion entertained for the third straight year and provided the best of 60s’ music. Another of Jake’s classmates, Anya Parker Lenz, performed the song “Mission Impossible” that she had written in Jake’s honor. Cheerleaders from the Jet’s Football Team’s Flight Crew enthusiastically cheered on the race participants. Food was provided by Whole Foods, Enzo’s Restaurant, and Splurge Bakery. Millburn Bicycle store High Gear was on hand to make necessary bike repairs.
Among the ride participants, were two students who have made Jake’s Ride the recipient of their Bar/Bat Mitvah’s projects because dystonia has directly impacted their families. Sarah Bressler of Short Hills explained that her mother Beth has dystonia which has affected her hands and arms. Sarah has donated $4,500 to Jake’s Ride raised through the sale of magnets. Sarah and Beth rode the five-mile ride today. In addition, Summit resident Jacob Richman’s grandfather has Parkinson’s disease, an affliction closely associated with dystonia. Jacob was part of a strong Summit team that included a Summit 7th Grade Team. The two Summit teams raised a total of $3,600 for the ride. As Nancy Silverman described, volunteering for the ride does not begin on the day of the ride but months before with school children raising money through various ventures including lemonade stands, shoveling snow, selling bracelets. She said that it is a grassroots effort and that most of the money raised comes in the form of five and ten dollar bills.
Joining Jake on ride-day were two young boys who also have dystonia. Sixteen-year-old Dillon Dean-Frazier from Old Lyme, Connecticut and eleven-year old Christopher Hynes of Stamford, Connecticut were on hand to cut the ribbons beginning each race. Maria Hynes, Christopher’s mother, exclaimed that “the collaboration of all these people is truly heartwarming.” Dillon Dean-Frazier crossed the finish line in his motorized wheel chair to cheers of many. He is a 16-year-old high school sophomore interested in math and music who hopes to work for the CIA. He and his father Harlan were impressed with Jake’s Ride which they feel is a unique way to raise awareness of dystonia.
Gold Sponsors of the ride are The Silverman Family Foundation, Blackrock, Chatham Asset Management, and two anonymous donors. Silver Sponsors are Jeff Cohen & Family, Macy’s, the Och Family, The Patron Spirits Company, and Bonnie and Tom Strauss. Bronze Sponsors are the Bass Family, Michelle Cohen, Steve Samansky and Family, and Jody and David Gardner. Helping Friends were the Allied Beverage Group, the August Family, the Beckerman Family, Fedway Associates. In-kind donations were made by threesixty, RoadID, Tribecca Rooftop, Vantastic Shuttle, and Whole Foods.
Sandra Cahn is the executive director of the Bachman-Strauss Dystonia & Parkinson Foundation. She stressed that Jake’s Ride is on a mission this year to raise a total of $1 million and that contributing to that goal was more community sponsorship than ever. The anchor stores at the Mall at Short Hills participated and Neiman Marcus placed one of the painted bicycles and signage prominently in a store window. Ms. Cahn hopes that Jake’s Ride serves as a prototype for other rides throughout the metropolitan area and, indeed, the country.