By Anastasia Marchese
Reading the medical description of Amyotrophic lateral sclerosis (ALS) cannot in any way describe the devastating effect this disease has on a human life.
Often referred to as Lou Gehrig’s disease because this famous baseball first baseman succumbed to ALS in 1941. Gehrig was undoubtedly an incredibly fit athlete who devoted his life to the sport. He played 17 seasons for the New York Yankees, from 1923 through 1939. His diagnosis with ALS rocked the nation, and his retirement speech is still regarded as one of the most memorable things that ever happened on a baseball field.
Yet at this point in history, more than 75 years after Gehrig’s death, there is not much more that can be done to treat ALS then there was then. Despite all the medical advances, and all the scientific and technological growth that has occurred in that time, there is no cure or even treatment that can significantly slow the progress of the disease. There are only medications and treatments to help deal with some of the symptoms, with clinics across the country that specialize in personalized treatment plans for ALS victims.
Donna York who started the non-profit organization, HARK in 2011, explained that she was compelled to found the charity after dealing with the loss of her father, Charlie “Hark” Dourney, to ALS in 2009. She had a large support group as she shared the care of her father with her six sisters and brothers.
“After he passed away I often thought, ‘What would I have done if I didn’t have my family, what if it was just me and I had to go through that myself, how would I ever have been able to manage? I would have been totally overwhelmed with nowhere to turn for help.’”
That is why York reached out last year to the Fleming family, when she heard that the father Scott, was suffering with ALS and was unable to return to his Florham Park home. He was living in a VA facility because his family could not care for him at home without significant renovations.
“The total cost of the renovations was going to be $130,000 and the VA gave him $70,000,” said York. She recalls Fleming’s words on the phone to her, “I don’t want to leave my wife in debt.”
Dealing with ALS and the cost of caring for a loved one at home can often lead to bankruptcy, due to many aspects not being covered by insurance.
Fleming is a former Marine and ALS is considered a service related disorder, since veterans are 60 percent more likely to be diagnosed with the disease than non-veterans. Fleming was living in the VA facility for two years.
Not only is Fleming a former Marine but he had been an avid runner and triathlete prior to his diagnosis. When York spoke with him about ideas to raise the funds needed for their home renovations, she thought that organizing a 5K to raise funds made sense. It also fits with York’s expertise as her career is as a race planner. Her company, AC Race Management works with organizations like Girls on the Run, to organize their 5K’s. Her professional experience can come in handy as she organizes events for HARK, in order to “change the way the world views ALS’” and to provide “assistance to alleviate the financial burdens faced by families battling ALS.”
Last year the first Scott-A-Palooza 5K raised $42,000. Home Depot donated $20,000 worth of materials to HARK, which were then used to help complete the renovations. In June of this year, Fleming was able to return home and live with his family again. Fleming considered HARK’s work complete now that he had returned home. York however wanted to make the Scott-A-Palooza an annual event in order to help the family continue to afford the many expenses associated with caring for Fleming at home.
On Sun., Sept. 18, runners and walkers will converge at the College of St. Elizabeth for the second, Scott-A-Palooza. Participants can sign up at runsignup.com/Race/NJ/Morristown/ScottAPalooza5KtoKickALS.
More information can also be found on the HARK website www.hark-als.org and its Facebook page www.facebook.com/Harkalshope/.