Written by Debbie ONeal for the RSDSA blog.
When you are diagnosed with CRPS, which is ranked as the most painful chronic pain condition known to man, you wonder why more doctors are not aware of what it is or how to treat it. You wonder why there is not more research being conducted and why there is not a specific treatment to help control the pain, especially since CRPS was first seen and diagnosed during the American Civil War.
How can we rectify this? How can we help make a difference? My co-chairs, Beth Seickel, Stacey Udell, and I had the idea to bring together those who have been diagnosed with CRPS and the medical community through a walk to raise awareness of CRPS. We want the CRPS community to know what types of treatments are currently available to them by having the medical community, as well as others, available to answer questions and concerns.
The event I am referencing is now known as the RSDSA Long Island CRPS Awareness Walk & Expo and 2019 marks the fourth year of the event!
With that being said, we knew this event could be so much more than just a walk. Keeping in mind that many of us with CRPS would not be able to participate in the actual walk themselves, we decided to offer breakfast during registration and a barbeque following the actual walk. We set up tables and chairs so everyone who attended could mingle or just hang out with their families and friends. We wanted everyone to always feel welcome.
We wanted our sponsors to each have their own table and a place where people could sit down and feel relaxed when talking to the sponsor representatives. Beth, who we often refer to as Nurse Beth, put together an education center where people could learn more about what CRPS is and provide more information about our shared condition. We felt it was so important because CRPS patients, more often than not, have more knowledge about CRPS than people in the medical field. This is something we hope to change.
A craft center was available for both children and adults. Last year we added a photo booth with props, which turned out to be a huge success. Another favorite was the wonderful raffle baskets that contained a variety of products such as Broadway tickets, concert tickets, and sports memorabilia donated by local and national businesses. Seeing people enjoying themselves made all the work we put into the walk worth it.
Jim Broatch, the Executive Director and Vice President of RSDSA, opened our welcome ceremony. This was followed by a few speakers who treat people with CRPS. We also invited people with CRPS and their family members to speak. After the welcome ceremony, everyone headed to the balloon arch for a group photo.
It was wonderful to see everyone enjoying themselves with smiles on their faces, especially when reaching out to our sponsors. When we saw people walking around the Education Center and gathering at the sponsor tables, we could see the importance of this walk for our community.
It truly is the most wonderful feeling to see the friendships that have been formed in the CRPS community through these walks. It sends a message to this community that you are not the only one who suffers from this condition. To talk to someone who truly understands what you go through on a daily basis is comforting and meaningful.
None of this would have been possible without our sponsors or the donations we received or our many volunteers who worked tirelessly to make this walk possible. Among some of our volunteers were Hofstra University students, Nassau County Police Dept., the Levittown Fire Dept, Local Girl Scout Troop 2425 Massapequa Association, as well as family and friends of those with CRPS.
Thanks to all the donations we received and our sponsors, RSDSA received 95 percent of the walk proceeds. This, in turn, helps RSDSA continue to support their mission statement which is to “provide support, education, and hope to all affected by the pain and disability of CRPS, while driving research to develop better treatments and a cure.”
Last year was our most successful walk, which had over 500 people attend. We hope to raise the bar again this year and, with your help, we can do it! For one, attending the walk provides a wonderful opportunity to meet Jim Broatch. If you cannot attend, you can still make a team to show your support for RSDSA.
We are also so thankful for the women who work in the RSDSA office. Their constant support and encouragement is always appreciated. For my co-chairs and me, it is sometimes challenging to bring everything together, having to battle CRPS and the side effects that come with it. Somehow, we persevere and seeing everything come together makes the challenges worth it!
This past year, we had teams from North Carolina, Rhode Island and the Tri-State area as well as other parts of the country. We look forward to seeing last year’s attendees again this year as well as welcome all you who will be attending for the first time. If you cannot travel, you can still be a part of RSDSA’S Premiere Walk by starting a team for your families or your town. Help us reach this year’s goal of $75,000!
If we are ever going to find a cure and better treatments it has to start with all of us. Take a moment to register for the 4th Annual RSDSA Long Island CRPS Awareness Walk & Expo on Saturday, September 7, 2019.
To see updates for the walk, please join our Facebook Group, RSDSA Long Island CRPS/RSD Walk.
As always we like to thank our sponsors and donors who help us achieve our goals.
Please consider making a donation to RSDSA today!
