For the third year, Eisenhower Park will house the Reflex Sympathetic Dystrophy Syndrome Association as it holds its annual walk to spread awareness for Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome, a disabling and debilitating neuro-inflammatory disorder.
On Sept. 15, from 8 a.m. until 2 p.m., participants will unify to raise awareness, fund better treatments, and find a cure for the rare syndrome. RSD occurs when the nervous and immune systems malfunction in response to tissue damage from trauma, such as nerve or musculoskeletal injury, surgery, or immobilization. There is currently no cure, effective form of treatment and diagnosis often takes months and sometimes even years.
The RSDSA, which is based out of Milford, Connecticut, has been holding its walk for several years in Central Park before expanding and moving to East Meadow. “It’s grown each year,” said Jim Broatch, the organization’s executive vice president and director. “It’s a fun, family day and a great way to learn more about the syndrome and support those who have it,” he added.
Because of the rarity of the syndrome, Broatch explained that many patients are not receiving effective treatment. Obstacles include accruing funding and proper medication, as there is no medication solely used to treat the syndrome.
Recently, however, strides were made in treating syndrome as it received national recognition as a “rare disease,” giving pharmaceutical companies the ability to extend experimental trials and test new medications known as bisphosphonates, including ketamine. Broatch said that this gives him hope for the future, but, as of now, there is much more to be done to support those living with the syndrome.
Educational resources, sponsors, and health professionals will be on hand during the walk, along with entertainment, raffles and craft activities for children. Walk admission is $25 for adults, ages 12 and older, $10 for children ages 6 to 11 and free for children under 5. Admission includes a complimentary bagel breakfast and a barbeque lunch, during which patients and caregivers could meet and socialize. Last year’s event drew nearly 450 walkers and 50 volunteers, and raised more almost $56,000 for the RSDSA, almost doubling their 2016 numbers. To find out more or register for the walk, visit https://bit.ly/2Lgi7h2.