By Jim Broatch, MSW
Executive Vice President, Director, RSDSA
I would like to introduce National Pain Report readers to the many programs and activities of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). Too often, people are referred to our website (www.rsds.org) or find us via a link during an exhaustive internet search. They see that our site houses a tremendous amount of helpful information but may lose sight of the fact that RSDSA is a vibrant organization which has been serving the CRPS community since 1984. Two moms with children with CRPS started our organization.
Our mission is to provide support, education, and hope to everyone affected by Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy (RSD) while we drive research to develop better treatment and a cure.
In terms of the first part of our mission, RSDSA has established two funds to support those with CRPS.
- The Maria Lane Fund is designed to help individuals navigate the public/private insurance landscape and to promote greater professional awareness of CRPS. This fund also helps to sponsor the development of education programs for healthcare professionals in an effort to increase awareness of CRPS.
- Our second fund is the Patient Assistance Fund in honor of Brad Jenkins. It provides emergency financial grants to individuals in distress. Since 2015, the fund has provided over forty thousand dollars in emergency financial aid. (https://rsds.org/jenkins-patient-assistance-fund/). Sadly, at times, our fund is the only available source which keeps families from living on the street.
- For the past three years, RSDSA has co-sponsored a free week-long camp for children in pain. One child remarked that the camp experience had literally saved her life. She had already tried suicide.
- This summer, RSDSA also developed a young adult’s weekend retreat to help those aged 18-29 transition into higher education, the workforce, and or living on their own. Read about Melissa’s experience, https://rsds.org/crps-retreat-gatherings-positive-impact/
- Later this year, we will publish the third edition of an invaluable financial and social services directory called In Pain and Agonizing over the Bills.
- Our staff and board of directors are always available to help individuals navigate this scary, perplexing diagnosis and begin their recovery journey. People can call us via our toll-free line 1-877-662-7737 or send an email, firstname.lastname@example.org. Whether you have had CRPS for decades or just months, we’re here to help and listen. One young adult just diagnosed, thanked us and wrote, “I have been completely overwhelmed and frustrated, but you gave me some hope and inspiration to research and fight to get better.”
Spreading awareness in the medical, legal and insurance fields, as well as to the community at large, is an integral part of our mission. Each year, RSDSA hosts regional educational conferences for people with CRPS and their care givers. Each conference is filmed and archived on RSDSA’s YouTube channel, (https://www.youtube.com/user/RSDSAofAmerica) and have also complied hundreds of peer-reviewed journal articles in our web library, https://rsds.org/existing-papers/
- Dr. Philip Getson, a New Jersey physician who has treated hundreds with CRPS is featured in two free accredited courses for physicians, psychologists, and nurses https://rsds.org/accredited-course-on-crps-for-mds-ph-d-s-and-rns/)
- We also have developed a ketamine protocol for emergency departments on how to manage CRPS flares (https://rsds.org/wp-content/uploads/2014/12/Tips-for-Managing-Complex-Regional-Pain-Syndrome.pdf)
- A free accredited pediatric CRPS course for pediatricians, nurses, and physical therapists is currently being authored
The third leg of our mission is research. Since 1992, RSDSA has funded more $3 million dollars in pilot studies and pain fellowships. Three years ago, we established the International Research Consortium with the goal of fostering increased collaboration amongst CRPS researchers worldwide. Their mandate is to promote research directed at relieving the pain and disability of CRPS, facilitating its prevention, and ultimately, finding a cure. Read about RSDSA’s current-funded research.
RSDSA exists to serve your needs, no matter how you are affected by CRPS. We are here to help and are guided by the thoughts of Henri J.M. Nouwen, “Often we are not able to cure, but we are always able to care.” RSDSA is so much more than a website. It truly is a community of caring. We invite you to look beyond our website to see the people and programs which give it life.