Written by RSDSA Intern Samantha Rose
How did you start working for the organization?
In the 1990s, I was working on the board of the National Organization for Rare Diseases (NORD). During this time, Dr. Robert J. Schwartzman convinced Roe Davis, Frank Davis, and Audrey Thomas to start the RSDSA Organization to support CRPS warriors. In search of a skilled and compassionate person to lead the organization, Mrs. Davis called Abbey Meyers, the founder of NORD, who recommended me for the position that I feel grateful to have had for the past twenty-five years. We then brought the organization to Milford, Connecticut.
How has the organization and its mission changed over the years?
When RSDSA first began, it had a newsletter, just as it does today. However, the newsletter today looks much different, and serves a very different purpose. Back then, it was filled with personal stories of “woah” about the struggles of CRPS. However, we have since changed the newsletter to make it a more informative and supportive outlet for CRPS patients, focusing on educating and giving hope to those with CRPS. “Hope” has become an integral part of our message and mission, one that we have– and will continue to– expand over the years.
Which aspect of the organization’s progress are you most proud of?
The courses that we have provided for doctors and nurses have been transformative in creating a medical world where more doctors are aware of, have interest in, and have the tools to help CRPS warriors. Additionally, the way that our organization has grown into the national, go-to organization for CRPS is incredible. We have built a patient-friendly community where everyone tries to help each other, regardless of physical distance. Planting seeds of hope has become much easier and more widespread with new social media outreach programs, much thanks to our social media manager, Alexis Johnson. In addition to increasing engagement on our virtual platforms, our Facebook Lives since the pandemic have educated and supported the RSDSA community. This is an improvement from before the pandemic, when we often had in-person conferences with 140-200 people attending. Now, we are able to have 1,400+ people from all around the country listen to guest speakers in their own homes. I am particularly proud of the Jenkins Patient System Program to memorialize Brad Jenkins, whose mom helped to start a fund for people to avoid eviction and get much-needed medications.
Which aspect of being executive director did you enjoy the most?
Often, new CRPS patients spend a quick fifteen minutes with their doctor discussing CRPS when they first are diagnosed, not receiving nearly the kind of education that they need in order to seek help and support. Therefore, being able to educate them, support them, and give them hope throughout their journey has been an incredibly rewarding experience. Whether it be through linking patients with financial support, service dogs, legal aid, medical professionals, or accommodations at work, I loved helping and supporting people. I specifically remember an instance where I was able to get a tank of propane filled for a warrior who could not afford it during a blizzard, and how the simple act created a huge difference in somebody’s life.
Which aspect of being executive director did you least enjoy?
While I loved being able to help people, the hardest moments of my day-to-day job were those when I was not able to provide the kind of help that somebody needed. Often, this came in the form of family members doubting their CRPS and abandoning them, diminishing the web of support and encouragement necessary throughout this journey. It also disappointed me when people did not find RSDSA until they were months and years into their diagnosis with no hope– we must try to reach people earlier in their illness to provide the kind of support they need.
What was your day-to-day life like as the executive director of RSDSA?
Before COVID, I often participated in many calls a day to help warriors when they sought more direction. This has changed, as most inquiries and responses now are sent through email. Every day on the job is a learning experience, as hearing people’s stories and needs allows me to explore what is lacking and how to improve our services. I also look for thought leaders and try to help curate treatment teams of doctors, physical therapists, occupational therapists, and aids for warriors to lead them in the correct direction.
How has the CRPS science changed over time?
Previously, scientists lumped all CRPS patients together for clinical trials, only differentiating subjects by Type I and Type II classifications. However, we no longer conceptualize CRPS as a homogeneous disease, largely due to a subset study conducted by Dr. Stephen Bruehl and Dr. Norman Harden. These doctors are the thought leaders of CRPS science, and have formed a collaborative team with which I have had great pleasure engaging. Through their work, we have been able to create five versions of clinical practice guidelines for CRPS. We also have used science to debunk the evidence-less theory that CRPS is solely psychological, validating the struggles of CRPS patients.
How can we expect the CRPS science to change in the future?
There currently is a study being conducted regarding neuroplasticity and treatments that are brain-based as opposed to targeting the afflicted limb. The Cleveland Clinic also recently received a multi-million dollar grant to evaluate a stem cell treatment for CRPS, with animal and human trials. We are also extremely hopeful about our CRPS subset study, which involves a consortium of three centers in Europe. My hope is that an international CRPS research consortium will come to fruition in the future; of course, this requires overcoming the long-standing challenge of not finding enough patients to participate in these studies.
What do you envision as the future direction of the organization?
For sixty years, ketamine has been known to be an effective treatment for chronic pain, but we have been barred by outrageous prices and legislative issues. This must change, hopefully through the work of the dedicated Jim Doulgeris with the RARE Act. Since 2016, there has been a war on people with pain because of misapplication of CDC and opiate guidelines, and we must fight back. This involves more research on CRPS and other rare diseases, which often is difficult because there is not adequate money to continually fund research grants. In the future, we might need to decide if the organization will mainly focus on research grants or support and education, or find other avenues for continued funding.
What are you most looking forward to during retirement?
I am excited to have more freedom and more time to explore the outdoors and go birdwatching and kayaking. In fact, my wife and I are going to see Christian Cooper, a famous birdwatcher and author, in Central Park. I am also an avid reader. I am excited to continue to give back to the community: my wife and I volunteer at a soup kitchen, and we look forward to other opportunities to help. Overall, I am looking forward to being present each day and treasuring every moment.
FROM THE AUTHOR
Jim, the RSDSA community and my family are so grateful for everything you have achieved and how much support you have provided over the past twenty-five years. Your passion for helping others and creating a better life for people never fails to shine through, whether it be in phone calls, emails, Facebook Lives, and everything in between. We wish you the best of luck and happiness in your retirement.
Best,
Samantha