RSDSA is seeking a motivated Events Coordinator and Developer to join our team in fall 2025.
The Events Coordinator and Developer is responsible for planning, organizing, and executing events that promote the mission, visibility, and fundraising goals of RSDSA. This role involves managing all aspects of event production, from concept to completion, and ensuring a high-quality experience for local event organizers, participants, and sponsors.
Key Responsibilities:
Plan, coordinate, and execute a variety of events, including fundraisers, awareness campaigns, conferences, galas, walks, social gatherings, and community outreach events.
Develop and manage event timelines, budgets, logistics, and fundraising pages.
Coordinate online event promotion via Constant Contact and In Rare Form newsletter in collaboration with RSDSA’s social media manager.
Recruit, train, and supervise volunteers or event staff as needed. Ensure event staff have what they need and can manage the event if you cannot physically attend.
Serve as a point of contact for local event organizers, sponsors, speakers, and partners.
Ensure all permits, insurance, and compliance requirements are met.
Evaluate the success of events through post-event reports and feedback. Makes appropriate direct acknowledgements of gifts.
Support the organization’s overall fundraising and communications goals.
On a rolling basis: Help identity and reach out to individuals and organizations we can partner with on a rolling basis.
Qualifications:
Bachelor’s degree in Event Management, Hospitality, Communications, Nonprofit Management, or a related field preferred.
2+ years of experience in event planning, preferably in a nonprofit or fundraising environment.
Exceptional organizational and time management skills.
Ability to manage multiple events and deadlines simultaneously.
Strong interpersonal and communication skills.
Proficient in Microsoft Office, Google Workspace, and Slack.
Comfortable with light travel.
Preferred Qualifications:
Experience working with CRMs such as Constant Contact, Qgiv, and DonorPerfect.
Familiarity with virtual or hybrid event platforms (e.g., Zoom, Hopin).
How to Apply:
Please send a resume and cover letter to [email protected] with the subject line “Events Coordinator and Developer Application – [Your Name]”. Applications will be reviewed on a rolling basis until the position is filled.
Since 2015, RSDSA has served as a co-sponsor for The Coalition Against Pediatric Pain’s (TCAPP) Pediatric Pain Week. We recently caught up with our Sue Pinkham about the decade-long relationship.
Tell us about yourself and how you became involved with RSDSA + TCAPP.
My daughter was diagnosed with CRPS when she was 15 years old after having a knee surgery, which was later learned to be unnecessary. After the surgery, when the pain wouldn’t go away, she was referred to the Pediatric Pain Rehabilitation Center (PPRC) at Boston Children’s Hospital (BCH), and they diagnosed her with RSD.
I met several Moms at BCH and we formed our own support group. The families would visit each other’s houses, have pizza parties/cookouts for the kids, and it was a great way for both the children and parents to support each other. It was awesome hearing the children laugh and have fun together.
As Moms, we searched for support for our children living with chronic pain, and quickly discovered there was nothing available for children in pain. At the time, we discovered RSDSA, but they didn’t have any information or events for children. We decided to support RSDSA through our fundraising efforts. RSDSA welcomed us with such compassion and love for our children. We named ourselves Mothers Against Chronic Pain! The MACPs. During the next several years, we fundraised for RSDSA, having yard sales, a Spring Fling, selling Macy’s Coupons, etc. In fact, I remember one
yard sale we made over $5,000 and RSDSA was wondering what we were selling! LOL!
After years of supporting RSDSA, I was asked if I’d like to join the Board of Directors. I was thrilled to be nominated and so thankful to the board for accepting me. I felt like it was a way to help not only my daughter, but all children suffering with CRPS. Soon after I joined, the board understood I was there to advocate for children with RSD/CRPS, because there was no support or understanding of what these children live with daily. After working with RSDSA for several years, most of our children from the MACPs were beginning to show signs of other diseases such as Ehlers- Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Gastroparesis, Mast Cell Activation Disorder, etc. As a group of Moms whose children were not only suffering from CRPS but many other diagnoses, we decided we needed to form our own 501(3) and The Coalition Against Pediatric Pain was formed.
It was a long journey for five Moms but it’s been the most rewarding experience of my life, other than being a MOM!
How did RSDSA become a co-sponsor of TCAPP’s Pediatric Pain Week back in 2015?
One of TCAPP’s dreams was to sponsor a summer camp for children living in chronic pain, not to discuss their pain, but to have FUN and meet other children/families who deal with similar medical conditions. When I talked to Jim Broatch about helping sponsor the camp, he loved the idea. We brought it to the BOD and we’ve partnered every year since 2015 to bring a summer camp to our children who live with chronic pain.
Even during COVID, RSDSA and TCAPP came together to do an online camp for the children, which was very successful. This year, we are taking 20 families to Great Wolf Lodge in Connecticut as our regular camp, the Center for Courageous Kids, has decided to have mostly individual camps, not family camps. We are very excited for our children and families and have lots of activities and FUN planned for this event. Currently, this event is full, but we are accepting applications for a waitlist.
What does RSDSA’s sponsorship entail?
RSDSA has co-sponsored TCAPP’s Pediatric Pain Week since 2015 by supporting us financially, advertising the camp, and sharing their brochures with all the families.
Together, we are making a difference in the lives of these children and families. It’s awesome to have a “sister organization” that works together as equals to give these children such an amazing experience of summer camp, making friends and having FUN!
What drives you to put on this camp each year?
Children living with chronic pain often miss parties, sleepovers, dances, vacations, etc., due to their medical conditions. Sometimes they are left out of friends’ gatherings, too, because they are the “sick” kid. TCAPP’s dream was to provide these children with a place where they felt safe, could make friends who “get it”, and to have FUN! Every child I’ve met at camp is inspirational, kind, and caring. It is an honor to be able to provide this camp for them and their wonderful families every year. It brings the community together and lets us know we are not alone in this journey.
Do you have a story that touches you the most over the last decade?
During one of our camps, one of the campers shared with the entire group that camp “saved her life”. She stood up in front of everyone and explained that she had attempted to take her own life two times, before attending Pediatric Pain Week. But, after attending our camp, she now had friends who understood what she was going through, and she could call or text them if she needed a friend. This was extremely emotional for everyone, but it made me realize how important it was to bring these children together and give them the experience of meeting others and learning to enjoy themselves even though they were still in pain. Distraction is an amazing tool for chronic pain patients.
How can CRPS Warriors get involved with Pediatric Pain Week?
During Pediatric Pain Week, parents are responsible for being with their children 24/7, therefore, we don’t have a lot of room for volunteers while camp is in session. Lodging is limited for volunteers as we want to serve as many children as possible. If you have a child living with chronic pain and have questions about our camp, please email [email protected] or call Sue at 781-771-2095.
Thank you very much for the opportunity to share RSDSA’s and TCAPP’s special relationship over the last 14 years. We are thrilled to have an amazing relationship with RSDSA and are very grateful for their support.
RSDSA recently donated $10,000 to help The Coalition Against Pediatric Pain bring children and families to TCAPP’s 2025 Pediatric Pain Week at the Great Wolf Lodge Adventure in Connecticut!
We have supported TCAPP since 2015. Our partnership is changing lives for children living in chronic pain. Learn more about Sending Children with Pain to Summer Camp.
One of the big arguments that insurance companies make about IV ketamine and CRPS is that it affects the liver.
Researchers and physicians, including Dr. Pradeep Chopra, Dr. Philip Getson, and Dr. Jay Joshi, analyzed the medical records of 52 patients who received IV ketamine and not one of them had an abnormal live function test.
McGill University researchers, in collaboration with colleagues in Israel and Ireland, have developed AI technology that can detect patterns in gut bacteria to identify complex regional pain syndrome (CRPS) with remarkable accuracy, potentially transforming how CRPS is diagnosed and treated.
The research identified significant differences between the gut bacteria of CRPS patients and pain-free individuals.
Read the full announcement, and learn more about the study, on the McGill Newsroom.
RSDSA has contacted the researchers to learn more about future trials/studies. We have also invited them to speak with the community about the findings. Stay tuned for more details!
The University of California, San Diego is sponsoring “The Effects and Mechanisms of a High CBD Cannabis Extract (BRC-002) for the Treatment of Pain and Health in Complex Regional Pain Syndrome” study.
The trial consists of a pre-treatment screening period, six-week treatment period and a two-week follow-up. It is for CRPS Warriors between the ages of 21-75.
Learn more about the study and if you’re eligible here.
Hiking in Oregon with my husband Patrick and dog Elmo one year after getting CRPS.
Written by Leslie Rowe for the RSDSA blog. Her full story and information about the scholarship she mentions below are in this video (deadline April 30, 2025).
How and when did you develop CRPS/RSD?
I had foot/ankle surgery in December 2023 and woke up with searing pain. I went to the ER twice in the first few weeks and had numerous splint changes. It felt like my foot was being crushed, electrocuted and held over a fire – all at the same time. It was red, twice the size of the left, much warmer and hypersensitive to touch. A pain doctor was the first person who had me take off both shoes and socks. After looking at the comparison, she told me I had CRPS. Thankfully this was just three months after my surgery.
Unfortunately, it put me in a tailspin. I spent hours researching “Dr. Googles” to find out why it happened, and how to fix it. I read I just had “6 months” before it would turn to the “cold stage,” so I was very scared. Now I know that is not correct. I have never gone to the “cold stage” and sometimes it is still a little warmer. I also now know that a scared brain causes neuropathways to be even more sensitive. Although I still have some pain and numbness, I know the early diagnosis is why I’m now able to hike 10 miles and bike 30 miles.
Why do you think you got CRPS/RSD?
I did an MR Neurogram in May, then later had EMG/NCV nerve testing that showed severe damage of several nerves in my foot/ankle. Some were in places I did not have surgery, so must have been from the nerve blocks I had during my surgery. That said, not everyone who has surgery and nerve blocks gets CRPS. After researching it, I believe these are the factors that contributed to it happening to me:
→ Genetics: I have Ehlers Danlos hypermobility, connective tissue disease and Raynaud’s, so my nerves are more sensitive.
→ Immobilization: I had several procedures, so I was supposed to be in a cast/splint/walking cast for 3 months. Now I know immobilization can exacerbate pain signals.
→ Warped view of pain: As a former Ironman triathlete, long-distance cyclist and runner, I pushed through too much, living by the mantra, “pain is weakness leaving the body”. I know now this really confused my brain.
→ Living in “Fight” mode: My dad died when I was eight, we had a house fire a few years later and my mom had several challenges, then died when I was in my early 20s. My nervous system was stuck in “fight” mode for decades – hypervigilant and trying to predict what next traumatic event may happen. Not a healthy way to live.
→ Type A multi-tasker: I used to jam-pack my schedule to get a million things done, taxing my nervous system.
What activities or treatments have helped you find temporary or long-term relief?
Common CRPS therapies like PT, desensitization, mirror therapy, graded motor imagery (I used the Recognise app), and lymphatic drainage massage were key. Others that helped:
→ Brain retraining: I learned so much from Alissa Wolfe’s course about how the nervous system becomes hypersensitive (even without CRPS), and how – and why – the brain sometimes amplifies pain signals. I acknowledge the pain, but don’t amplify it.
→ Forgiveness: This was very difficult and took many months, but I had to let go of the anger I felt at the doctors. I know they didn’t intentionally do something to make this happen. I also knew the anger was keeping me from healing.
→ Movement: I kept moving my foot, even when it was just a millimeter at a time, and I had to move it myself. In the pool, I’d just hang at first, as it felt better being weightless. Eventually I swam, but at first just using one leg. I got an old recumbent indoor bike, then an old outdoor trike.
→ Steroids: I was on prednisone for almost three months (different doses), and that helped tremendously.
→ Hydrydissection: I had a nerve hydrodissection to separate the one nerve from scar tissue. It was incredible to watch on the ultrasound! The week after, I rode my 2-wheeled bike – giggling like I was a 4-year-old child learning to ride for the first time.
→ Science of slowing down: Praying more and intentional breathwork help give my body and brain rest time throughout the day. I try not to over-schedule myself and be more open to people helping me. When I have a setback, I know I need to stop and rest.
What advice would you give to newly diagnosed Warriors?
Stay positive! Anxiety causes your brain to be more sensitive to pain. Learn how emotions affect pain. Know you have some control over the level of your pain by how you respond to it. Educate your family and friends about the neuroscience of pain, and how to help you improve without pushing too hard. Be clear with them about your pain level, so they know when you may need more physical help and emotional support. Don’t spend too much time on the internet but do your research and be an advocate for yourself. Your journey is unique – what works for someone else may not for you. Try the least invasive therapies first, to see if they help. I never did sympathetic nerve blocks and some of the drugs suggested because I wanted to get to the root of my pain and felt those may just cover it up. I know they do work for some people though.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
That’s a tough one, as I’ve just had it for a 1 ½ years and cannot imagine having it for a long time – especially if it was not diagnosed early. When I talk with people who’ve had it for years, I try to encourage them to stay hopeful and try therapies related to rewiring hypersensitive nerve pathways. In a recent conversation with someone who is an expert on CRPS, he suggested that people who’ve had CRPS for a long time have neuropathways that have been cemented like “8-lane highways” compared to my brain last year, which was more like a “dirt lane road” and probably easier to rewire since I was diagnosed so early. That said, the brain is amazing and always creating new pathways, so hopefully those who have had this a long time can still get some relief from brain retraining strategies.
What is one thing you wish those without CRPS/RSD could understand?
Be supportive and empathetic, hopeful and encouraging. Ask about the pain, but don’t talk about it too much. Sometimes it’s good to have the brain rest from that conversation – and the person doesn’t want to be defined by the pain.
Anything else you would like to add?
I am covering half of a scholarship for Alissa Wolfe’s self-guided course (usually $599), which is what helped me so much. She also has a more personalized course with small support groups. I share my journey in this video, which I hope can help those suffering from CRPS: Life-Changing Help For CRPS + Scholarship Announcement (Leslie’s Recovery Story).
By Lisa Van Allen, Chair for RSDSA’s Advocacy Committee
I was recently listening to one of my favorite podcasts, HiddenBrain hosted by Shankar Vedantam, where the guest was talking about her research into how people respond to overwhelming challenges. In the episode, “When It’s All Too Much,” Sarah Jaquette Ray describes how she found her students were overwhelmed by the problems in today’s world to the point of nihilism, deep depression and in some cases suicide. It was not a leap to compare these students to people living with Complex Regional Pain Syndrome, nicknamed “The Suicide Disease.”
Living with unrelenting pain can drive you to feel that life is meaningless. There are many losses on this journey of pain – mobility, career, relationships, and especially the image you had in your mind of what your life was going to be. Those losses chip away at your sense of self and the things that bring you joy. Surviving and thriving in the face of this darkness is not easy. It requires choosing hope and intentionally lining up activities that give you a sense of meaning and purpose.
Sarah Jaquette Ray spoke about several things that she believes can combat this nihilism. I believe these techniques will work to offset the deep suffering that comes with CRPS.
→ Being part of a community rather than trying to face overwhelm alone is essential. Isolation is a normal response to feelings of grief and depression, but it is not a solution. Sharing your fears and griefs with others lightens the load. But make sure this group focuses mainly on hope. If you’ve ever been in a Facebook group where everyone is describing how awful their symptoms are, you know just how contagious darkness and depression can be. That doesn’t mean you have to be a ‘Pollyanna’ and only express positive thoughts. Just be sure to surround yourself with people who know how to encourage and support you.
→ Focusing on beauty in spite of the ugliness in the world. We live in a world filled with extraordinary beauty, but we tend to spend more time on destructive, ugly things coming at us from our phones, TVs and other media. It is survival, not escapism, to turn off the news and turn on NatGeo or Discovery.
→ Learning to hold joy and suffering at the same time requires emotional maturity. All or nothing, black and white thinking limits your capacity to cultivate joy and purpose. Simply holding out your hands and imagining that you are simultaneously holding joy in one and suffering in the other opens a window of opportunity in your mind. Yes, I am in pain – And I am enjoying this moment because I am ___________. How would you fill in the blank? For me it might be holding my puppy, or painting a picture, or sitting on my deck with the sun on my face.
→ Finding small ways to reduce the pain. I can’t completely eliminate my pain, but I can find little things that make it better. Soaking in scented epsom salts and then spraying on a moisturizer makes my CRPS affected foot look and feel a little better. Mindfulness meditation is not a cure, but even five minutes of mindfulness and relaxed breathing reduces the stress that builds from constant pain. Getting a massage on non-affected areas helps reduce stress and tension as well.
→ Building up your spirituality and/or faith. Research has demonstrated over and over that meditation and prayer reduces pain and helps with healing. Belief in a Power greater than yourself and your problems can bring great comfort.
→ Spending time in purposeful activities helps you feel better about yourself and combat those feelings of worthlessness. Write a letter to your congressman about legislation that would make life better. Write an article for the RSDSA blog or your newspaper. Join a support group and share your story. Participate in the RSDSA Virtual Walk and raise funds that make a difference. There are all kinds of ways you can make life better for yourself and everyone living with CRPS.
Depression can be a serious disease. If you find yourself struggling with feelings of sadness, grief, loss, and or meaninglessness that last more than a few days and lead to pervasive thoughts of harming yourself, please get help. Contact your medical provider or a mental health professional. You might find that treatment of your depression might help with your pain, as medications used for depression and anxiety have been proven to help with pain management. Instead of allowing darkness to overwhelm, choose to create a life of meaning and joy.
If you’re ever in need of help, please call the National Suicide Prevention Lifeline by dialing 988. You can also send a text to the Crisis Text Line by texting the word HOPELINE to 741741
In a recent RSDSA-supported study published in BMC Molecular Medicine, scientists describe, for the first time, two biological subtypes of CRPS type 1 that are consistent across both skin and blood.
This study identified two potential biological subgroups of CRPS type 1 in women through skin and blood transcriptomic profiling, advancing the understanding of CRPS. This could facilitate the development of targeted treatments for CRPS type 1.
I was recently asked for input on new legislation introduced by Rep. Marianette Miller-Meeks and five of her colleagues: Reps. Nannette Barragan (D-CA), Nicole Malliotakis (R-NY), Brad Schneider (D-IL), Rick Allen (R-GA), and Donald Norcross (D-NJ). The DRUG Act, or Delinking Revenue from Unfair Gouging Act, is a bipartisan bill that would rein in Pharmacy Benefit Managers (PBMs) requiring them to only charge a flat fee for drug placement versus letting them continue to charge a percentage of the drug price.
My response was a big YES – I support this bill and think you will want to as well. Here’s why:
The current structure in most pharmacies incentivizes PBMs to promote higher-priced medicine that takes money away from patients. PBMs are third-party administrators that manage prescription drug benefits for employers, health insurers, and other clients. They negotiate drug prices, process claims, and provide services such as drug rebates, disease management, and medication adherence programs. PBMs contribute to high drug costs because they are incentivized to steer patients towards drugs that are more profitable for PBMs, but may be less clinically effective for consumers. This broken system disproportionately harms low-income individuals, seniors, and those with chronic illnesses who rely on life-saving prescriptions to manage their health.
One of the challenges in demanding greater accountability from PBMs is the relative lack of information about how they operate. The drug pricing process overall is already opaque, and PBMs add another layer of secrecy. Most insurers contract with PBMs to handle the administrative side of their drug benefit provision. But PBMs have no obligation to share details with insurers about how the PBM determines formulary placements, why some drugs in the formulary are more costly than others, and what proportion of the rebates and negotiated drug payments PBMs keep. This presents a challenge for insurers, plan sponsors, and for patients who end up bearing the cost of medications they desperately need.
PBMs are a growing faction in the distribution and payment ecosystem for prescription medicines. As the entity between pharmaceutical companies and pharmacies, PBMs initially played a key role in reducing prescription medicine costs and increasing access and affordability for Americans. Unfortunately, PBMs have grown and vertically integrated to the point where the three largest PBMs control over 80% of prescriptions, up from 30% in 2010. There are six PBMs that make up most of the market: CVS (Caremark), Cigna (Express Scripts/Evernorth), UHC (OptumRx), Humana (Pharmacy Solutions), Magellan (Prime Therapeutics), and MedImpact Healthcare Systems. Their modern-day practices of driving up list prices to extract higher rebates for formulary placement are occurring at the expense of patients in the form of higher insurance premiums and higher prescription drug costs.
PBMs often bill patients more than what they pay to the pharmacy for medicines and keep the difference, enriching themselves instead of the patients they are supposed to benefit. This business practice, known as spread pricing, adds opacity to a supply chain that needs transparency. PBMs have attempted to rebrand spread pricing, calling it “risk mitigation pricing,” and contending that it provides predictability for plan sponsors and lowers drug cost. what spread pricing actually does is drive up costs without any accountability or explanation to the consumer.
Please write to your US Representative and ask them to support H.R. 6283, the DRUG Act, and start Delinking Revenue from Unfair Gouging.
Representatives Doris Matsui (D-CA) and Gus Bilirakis (R-FL) and Senators Amy Klobuchar (D-MN) and Roger Wicker (R-MS), co-chairs of the Rare Disease Congressional Caucus, reintroduced the Scientific External Process for Educated Review of Therapeutics (EXPERT) Act, which seeks to formalize the Externally-Led Scientific-Focused Drug Development (EL-SFDD) meeting at the Food and Drug Administration (FDA).
This legislation seeks to bridge the gap between rare disease expertise and regulatory expertise through the EL-SFDD. These quarterly meetings will provide an opportunity for enhanced collaboration between medical experts, drug sponsors, scientific organizations, and patient advocates to discuss the challenges impacting the development of rare disease treatments, identify scientific opportunities to facilitate development, discuss novel clinical trial designs, and align on endpoints to address unmet medical needs for rare disease patients. Each meeting will focus on a different rare disease topic, and the FDA will report annually on how these sessions are helping to shape and improve its internal review process for rare diseases.
In layman’s terms, this would put researchers in the same room with patients and funders to work together toward shortening the timeline on the creation of drugs that treat rare diseases like CRPS.
When you contact your congressional representatives, be sure to also ask them to support funding for Medicare/Medicaid and FDA research. Budget cuts are coming and we need to remind our representatives just how important healthcare services and research are to us. If you have a specific story about how Medicare or Medicaid covers treatment you need, be sure to include it. And then share your letter with us – we want to hear your stories and have examples to share with others.
