The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) has announced that Saturday, Sept. 7 will be the date of the 4th Annual Long Island Awareness Walk and Expo for Complex Regional Pain Syndrome (CRPS). More than 500 people suffering with the most extreme chronic pain known to man are expected to gather at Eisenhower Park, East Meadow, for the event that is designed to be a community educational day as well as a fundraiser.
RSDSA supports people and caregivers diagnosed with CRPS (aka RSD), a debilitating and chronic disorder that afflicts more than 2,000 Long Islanders with unrelenting neurologic pain that trumps the pain of cancer, amputation and childbirth. Online registration for this year’s Walk and Expo is ongoing now through Aug. 15. After that date, participants may register the day of the event at Eisenhower Park.
The goal of RSDSA’ s annual Long Island Walk and Expo is to raise awareness, fund better treatments, and ultimately find a cure for this disabling neuro-inflammatory disorder that can happen to anyone following a trauma of any kind. The 2019 RSDSA event on Long Island is designed to give patients, caregivers, medical experts, therapists and businesses the opportunity to network in an informal, supportive environment.
This year’s Walk and Expo will take place from 8 a.m. until 2 p.m. at Eisenhower Park’s 1K and 2.5K paths reserved for the event. In addition to almost 500 walkers last year, the 2018 event attracted more than 50 volunteers and more than doubled the money raised from the inaugural walk on Long Island in 2016.
“Since its inception on Long Island three years ago by three female patients who suffer with severe CRPS, RSDSA’s awareness walks on Long Island have raised more than $150,000 for the organization,” said Jim Broatch, RSDSA’s executive vice president and director. “Our Long Island Walk and Expo has attracted more than 1,500 attendees to date from throughout the metro New York region, as well as other states far and wide. It has become one of RSDSA’s most successful fundraisers, and is so important to us because our organization relies on these programs for emergency patient services, research, education, advocacy and more. The event is much more than a walk. Our hope is to expand the CRPS community by creating awareness of the disorder, offering support, providing education, creating networking opportunities and raising much needed funds.
CRPS plagues some 200,000 people nationwide; however, it is often under-reported and misdiagnosed. According to one report, only 4 percent of medical schools offer dedicated courses on pain, which leaves today’s providers without all of the skills required to detect, treat and manage CRPS. This further contributes to improper treatment for those diagnosed with CRPS and often leads to overall failure in care and treatment.
Registered participants may choose to walk, run, roll or simply just attend this year’s RSDSA event. Anyone can attend regardless of ability. Walk admission for 2019 will cost $25 for adults (ages 12+); $10 for children ages 6-11; and free for children under 5. A free T-shirt will be distributed to pre-registered participants. Day-of admission is also available at the park for $30 for adults and $10 for children.
Educational resources, sponsors and health professionals will be on hand during the walk, along with entertainment and craft activities for children. Admission includes a complimentary bagel breakfast. The walk will be followed by a barbecue lunch to encourage socializing with other CRPS patients, care givers, sponsors and medical professionals. Raffle prizes will help generate additional funds for RSDSA.
For more information about the Sept. 7 RSDSA Long Island Awareness Walk Event, visit: www.firstgiving.com/event/rsds/4th-LI-CRPS-Walk.
Formed in 1984, Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is an international 501(c)(3) not-for-profit organization based in Milford, CT. Its mission is to provide support, education and hope to all affected by the pain and disability of CRPS, while driving research to better develop treatments and a cure. RSDSA, which sponsors similar walks and fundraisers in other cities across the US, aims to improve the lives of those affected by Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.
For more information about RSDSA, visit rsds.org, call 877-662-7737, or email RsdsaLongIsland@gmail.com.
