By Guest Blogger Beth Seickel
Many of us attend or get involved with a walk to support a family member or friend challenged by a specific diagnosis or condition hoping the fundraiser will help to create change. So, how can a RSDSA event be any different? Who participates? What can one expect? Where is it held? Do you have to walk to attend? Is it accessible?
Simply stated, RSDSA’s Long Island Annual CRPS/RSD Awareness Walks reflects their mission statement by creating:
- Awareness and Advocacy
- Education and Resources
- Comradery and Networking
- Validation and Support
- Hope and Encouragement
In 2016, RSDSA’s 1stAnnual Long Island CRPS/RSD Walk hosted 225 kids and adults, raising $25,000 despite the heat and humidity at Eisenhower Park in East Meadow, NY. Impressive as CRPS formally known as RSD (Reflex Sympathetic Dystrophy) is considered a “rare condition” under National Organization for Rare Disorders (NORD) a 501(c)(3) organization.
Now imagine, not only meeting for the first time another individual living with Complex Regional Pain Syndrome but actually having a conversation about the medical, social and personal challenges with another who actually understands. To realize you are NOT alone is an awesome realization brought forth by a RSDSA walk event.
Now jump to September 9, 2017. Despite the walk committee co-chairs living with CRPS, numerous flares and hospitalizations, RSDSA’s “2nd Annual Long Island CRPS/RSD Awareness Walk” came to fruition, attracting some 450 participants from NY, PA, NJ, RI, CT and Italy, raising over $53,000.
So how did RSDSA reach so many people? Through the tireless efforts of Stacey Udell, a CRPS patient and volunteer walk co-chair, whose media outreach linked RSDSA with Sandy Hillman Communications, News 12 Long Island, WBAB, WRHU,
“The RSDSA Mission is to provide support, education, and hope to everyone affected by CRPS/RSD while we drive research to develop better treatment and a cure”.
Newsday, East Meadow Herald amongst others to help create awareness aboutCRPS and the event. Additional photos @RSDSA or Facebook.com/RSDSA
Jim Broatch, Director and VP of RSDSA, opened the event by welcoming all who travelled near and far. After a few housekeeping points, Jim shared the origins of RSDSA, noting the incredible growth of the organization from its humble beginning back in 1984 from the kitchen table of 2 determined NJ moms. What an evolution.
After thanking all the volunteers and event sponsors, Jim encouraged everyone to visit the raffle tables and take advantage of the wealth of information found in the “education and exhibit” tent before, after, and during the 2K or 5K accessible walk.
Jim recognized Amanda from IL. as the winner of the tee shirt contest. Amanda’s design brought cohesion to the event by depicting how so many including her mom feel living with CRPS.
After which, Jim introduced Rachel, daughter of co-chair Debbie to speak about “Living With a CRPS/RSD Parent,” which brought tears to many. Our special honored guest, Dr. Brian Durkin, a board-certified anesthesiologist with Pain Institute of Long Island, was the final presenter Jim introduced.
To commemorate the day, a group photo was taken highlighting teams decorated in colorful team shirts, hats, wheelchairs, canes, scooters, crutches and painted faces. All stood together celebrating they are NOT alone.
With spirits filled with hope, the walk was kicked off alongside Jim Broatch and the walk committee. Whether with a walker, or as a roller in a wheelchair or scooter, or with a cane/crutches, all were surrounded by a large group of support as they traveled around either the 2K or 5K paths with family and friends.
Participants were encouraged to read as many educational signs they could find around the paths, while stopping at water stations welcomed by volunteers cheering them on. All were congratulated with an event medal at the finish line, which for many was an incredible sense of accomplishment.
Throughout the event, attendees were able to gather a plethora of education and resources in the “Education and Exhibit Tent”.
Nurse Beth along with her husband were truly key in setting up the education center for resource center. She keeps her focus on educational resources for those with CRPS/RSD as well as practitioners treating CRPS/RSD.
- Abbott (St Jude Medical) DRG stimulator
- Pain Institute of Long Island, Dr Brian Durkin
- WBAB broadcasting at event
- Stony Brook Center for Pain Management
- Edelman, Kransin and Jaye PLLC
- Town Total Compounding Center LLC
- Vitalitus LLC
- Medtronic (SC stimulator)
- NSPC Neurological, Brain & Spine Surgery
- CRPS Treatment Center of Italy
- Distinctive Dental Services of N.Y.
- Zwanger and Pesiri Radiology
- Farmingdale Physical Therapy East
- Medical Arts Radiology
- Vireo Health (Medical Cannabis)
- TCAPP (The Coalition Against Pediatric Pain “A national non-profit committed to improving quality of life for children living with chronic pain from rare diseases.”
- Educational Boards
Once again, we were so grateful to the:
- Levittown Fire Department for volunteering to BBQ
- Medical tent coverage: EMT Ryan, and nurses from local hospitals
- Family and friends assisting with setup, running and clean up whom we couldn’t have done without
- Massapequa Girl Scout Cadette Troop cheering on walkers while manning a water station and handing out orange necklaces, hand clappers, etc.
- Sorority Sisters from Alpha Epsilon Phi from Hofstra University, including student producer Marci Delaney accompanied by Fran Spencer, producer of WRHU’s “A League of Our Own”
Food donations from:
- Seaford Bagels
- Uncle Giuseppe’s of Massapequa
- Costco and BJ
- Cookies Unlimited
- BBQ food provided by RSDSA
- Hamburger buns by Team Marni
- Water, Ice and Stickers by Team Drew
- Shirts, Medals and chap sticks by The Vernon Company
- Raffle baskets from Team Tiffany
- Pain Pathways donated magazines
- Sore No More samples
- Melaleuca energy bars
- RSDSA brochures, cards
However, none of this would be possible without the constant support of Jim Broatch, Executive VP & Director RSDSA and Samantha Anderson, RSDSA’s Special Event Coordinator.
If anyone was not mentioned, please know we are just so grateful! And as the walk committee still recovers ALL of us including the 450 participants and sponsors took a huge stand together to create CRPS awareness which is: “A Real Medical Condition.”
Stay tuned for information on RSDSA’s 3rd Annual CRPS/RSD Awareness Walk in September 2018. But till then, THANK YOU to all our sponsors!