RSDSA Executive Vice President & Director To Retire

To the RSDSA Community,

We hope this message finds you well. Today, we are reaching out with an important announcement regarding a change within our organization.

After 25 years of dedicated service and outstanding leadership to the CRPS/RSD community, our Executive Vice President & Director, James W. Broach, MSW, has decided to retire effective March 31, 2024. Jim’s leadership and contributions have been invaluable, and we are immensely grateful for his unwavering commitment to the CRPS community.

Under Jim’s guidance, RSDSA has achieved remarkable milestones and grown in ways that have positively impacted countless lives. During his 25 years of service, RSDSA became the go-to patient advocacy organization for people with CRPS. It invested more than $2.2 million in basic and clinical research, conducted numerous conferences and educational presentations on the diagnosis, treatment, and management of CRPS, published evidence-based Treatment Guidelines, established an emergency financial assistance program, offered accredited CME courses on adult and pediatric CRPS to healthcare professionals, and created a compassionate patient-centered culture.

His vision, passion, and dedication have set a high standard for excellence, and he will be deeply missed in this role. His skills are not entirely lost to us, however, as he has promised to remain available to our incoming Executive Director, and ease her transition into the position.

While we bid farewell to Jim, we are excited to announce that current RSDSA Board Vice President, Sharon L. Weiner, will assume her new role as Executive Director. In addition to having CRPS for over 25 years, Sharon was also a founder and the president of Living with RSDS, Inc., a New Jersey not-for-profit that offers multiple support groups. Sharon is a co-founder of our Young Adult Weekend Retreat, a member of our Executive Committee, and the chair of our Support and Board Nomination Committees. She brings a wealth of personal and professional experience, including her numerous presentations at RSDSA conferences, that we believe will continue to honor our mission and give vision to RSDSA’s future.

We are organizing a special farewell fundraiser to honor Jim’s legacy. Please consider supporting the campaign by clicking here. RSDSA will also organize a virtual meet and greet in March to introduce Sharon to our community. Details about this event will be shared in the coming weeks.

Again, we express our heartfelt gratitude to Jim and our warmest wishes to Sharon in her new position. We are confident that together they will effect a seamless transition which will enable Sharon to expand upon the strong foundation built by Jim and his 25 years of RSDSA stewardship.

Thank you for your ongoing support, and we look forward to the exciting journey ahead.


The RSDSA Board of Directors

Join us for Treating the Whole Person: Optimizing Wellness 2023

RSDSA’s free virtual Treating the Whole Person: Optimizing Wellness conference is taking place Monday, November 6, 2023 through Thursday, November 9, 2023!

This event will stream for free here on our Facebook Page and YouTube Channel at the same time. There is no registration required.

Join us live to interact with other CRPS Warriors and our speakers. If you miss a session or want to watch it again, the sessions will be available on our Facebook Page and YouTube Pages immediately after they end!

→ Monday, November 6th at 12:00 pm Eastern | An Update on Neuroplasticity and TrainPain with Dr. Elan Schneider

→ Monday, November 6th at 8:00 pm Eastern | A Conversation with Disability Activist, Author, and CRPS Warrior Tara Moss

→ Tuesday, November 7th at 7p Eastern | Lessons We Can Take Away from the Tragic Story of Maya Kowalski (Take Care of Maya) with Bryan Pope

→ Wednesday, November 8th at 7p Eastern | KarunaHOME Program – CRPS Treatment Success with Matthew Sheers, NBC-HWC, CPMC

→ Wednesday, November 8th at 8:15p Eastern | Abbott’s DRG Therapy – Understanding Your Options for Targeted Pain Relief with Denis G. Patterson, DO

→ Thursday, November 9th at 7p Eastern | Qigong – A Natural Remedy for Pain and Stress Relief with Marie Theriault

→ Thursday, November 9th at 8:15p Eastern | Understanding Suicides after Prescription Opioids are Stopped: The CSI:OPIOIDs Research Study with Stefan G Kertesz, MD and Allyson Varley, PhD

Join Abbott On Neurostimulation for Foot Pain Webinars Through March 2024

Abbott is holding a free national patient education event webinar series through March 26, 2024 at 7p Eastern.

The webinars will focus on how Abbott’s neurostimluation therapy offers an FDA-approved, medication-free, long-term treatment option for chronic pain.

Feel free to join the free session that is most convenient for you. Each session will provide the same information.

Abbott is a proud sponsor of RSDSA.

There are Many Ways to Become an Active Member of the RSDSA Community

While you are always welcome to visit the RSDSA website and take advantage of all of the information and resources you’ll find here, many members find that they get the most out of their affiliation with RSDSA by getting involved in our many activities. It has been proven time and again that those who participate actively in the community function better and lead more fulfilling lives.

Whether you are an adult or a youth member, you can really make a difference! Here are some of the ways you can help the community and yourself:

Help RSDSA educate health care professionals. RSDSA has developed three free accredited courses on the diagnosis, treatment, and management of Complex Regional Pain Syndrome in adults and children.  Please help us inform health care professionals in your community about the availability of these free courses.
RSDSA Pediatric CRPS Accredited Online Course
Accredited Course on CRPS for MD’s, Ph.D.’s and RN’s

Create and Run a Fundraising Event – Starting an event in your local area to raise funds for RSDSA can be fun as well as fulfilling. Kids, teenagers, and adults have all had a hand in putting together creative events that get terrific support. Email us if you would like to host a fundraiser. Here are a few ideas and links to tips for how to accomplish them:

  • Organize a Walk-a-Thon – These are always a popular way to raise funds. Click here to get all of the information you need to create a successful walk-a-thon.
  • – Hold a Dine to Donate at a local restaurant – Many restaurants will be delighted to donate a percentage of the proceeds of a designated evening to RSDSA, especially when you invite a lot of potential new customers to participate. Click here to learn more about hosting a successful Dine to Donate event.
  • Other interesting fundraiser ideas have revolved around Casual Friday and Wear a Hat to School Day. We can give you the details so that you do not have to reinvent the wheel. You are also free to create an idea that you think will succeed in your area and go for it! Here is a link to a very useful article about how to run a successful fundraiser regardless of the theme.

Blog for us! RSDSA wants to hear from you. Do you have a story to tell or an experience to share? A list of items you find useful? Something you think other people with CRPS may relate to? If so, we want you to write for the RSDSA blog. We frequently post a new blog to our site that is written by a member of our community as it is a great way to share your experiences with the community and connect with them on a personal level. We share these blogs to all of our social media sites. Your blog can be funny, serious, uplifting, realistic, and even poetic. Everyone has a story to tell so tell yours today by emailing us.

Share Your Story of Hope – CRPS/RSD can cause great losses. However, many people who persevere and take control of their condition chart courageous paths that inspire others – both within and outside the RSDSA and chronic pain community. When you share your story here on the RSDSA website and with your own local media, you can accomplish two very important goals of spreading awareness of CRPS/RSD and helping others find their own strength and courage to live better with CRPS/RSD.

Email us to talk about sharing your story of hope in writing or in a video.

CRPS Awareness Day 30: Awareness Must Become Our 365 Day Activity

RSDSA executive vice president and director Jim Broatch details the importance of continuing CRPS awareness efforts beyond November and into the yearBy Jim Broatch, MSW, Executive Vice President, Director RSDSA

Executive Vice President and Director of RSDSA, Jim Broatch, details why it is crucial that we continue our CRPS awareness efforts beyond November. Awareness is a 365-day effort that we must push forward with in order to make positive change in the world of chronic pain.

First, a standing ovation for all who participated in the fourth Annual Color the World Orange (please visit their page by clicking here). It was an outstanding success and is growing exponentially each year. Billboards in Times Square, New York were just one of more than 100 locations in six countries that turned orange for Color The World Orange. Other locations included Niagara Falls and the Trafalgar Square Fountains in London. In addition, a record breaking 76 proclamations were granted in the US and Canada recognizing Color The World Orange and CRPS/RSD awareness. This is truly an astonishing accomplishment that could not have been made possible with people with CRPS and caregivers who proactively pursue opportunities to promote CRPS.

Hats off to RSDSA’s bloggers who shared their personal journeys each day this month. What an inspiration. I was also amazed at the many selfless individuals who asked family and friends to give to RSDSA in lieu of a birthday gift.  We are immensely grateful to everyone who helped to increase awareness of our very little known, rare syndrome.  These November events continued the momentum of years past and brought new hope and support for CRPS

My dream, my unceasing prayer is that someday, Complex Regional Pain Syndrome will become a household name, a name as easily recognizable as fever or measles. It is so disheartening to receive emails and phone calls from individuals with CRPS who have traveled to countless doctors searching for a diagnosis for their unrelenting pain that should have been diagnosed as CRPS by their medical providers. We must do better.

How do we begin?

We must continue to share our stories.  One very effective suggestion is to approach your daily, weekly, regional newspaper and radio and television station and request to speak with the health editor or a reporter about CRPS, explaining that this is the most painful but least known chronic pain condition in the world.  It has been my experience that once reporters become engaged, they are fascinated by CRPS.  As a media resource, you can often remain anonymous or only share your first name if you prefer to maintain your privacy. At RSDSA, we can provide information about diagnosis, treatment, and emerging research.  Ask your health care professional to help too.  RSDSA volunteers and staff are always available for media interviews.  We are always looking for writers as a part of our blog series, #TheTuesdayBurn. It is a great way to start sharing your story (email us your story at [email protected]). Through our partnership with The Mighty, we are also always looking for submissions there that will broaden our reach to those that may not know they are affected by CRPS yet.

Our print and broadcast media are consumed with the opioid epidemic with little mention of people suffering with chronic pain; yet one in three Americans is in chronic pain.  It’s a national tragedy that those living with chronic pain conditions such as CRPS, are misunderstood, lumped together as potential “drug seekers” rather than people living with the highest-rated pain on the McGill pain scale and CRPS is often not recognized as a true medical condition in need of solutions rather labels.   We must amplify our voices and specially call attention to CRPS.

Another way we are helping to create awareness of CRPS is with RSDSA’s two free accredited courses that we have developed for physicians, nurses, and psychologists. We can provide you with flyers about the courses to share with health care professionals in your community or just click here!

Education needs to include not only the health community but also our legislators. We must dissolve the myths and stigmas associated with chronic pain which is a real condition and the number one reason for doctor visits or to seek care in the Emergency Department.

We have also developed easy-to-understand educational brochures which can help you promote CRPS awareness among other professional or lay audiences, such as your employer, local library, religious institutions, etc.:

An excellent synopsis of treating CRPS with physical and occupational therapy

This brochure details the signs and symptoms of CRPS and presents some treatment options

This card describes CRPS from the point of view of a person with the syndrome and some suggestions on how others might help. Cards are free. We only ask for a small good-will donation to defray costs and to support our mission


Make other aware of CRPS by posting RSDSA’s car magnets and proudly wear our t-shirt that’s available in our online store, which you can visit by clicking here.  These make thoughtful and inexpensive holiday and birthday gifts for you and loved ones who support CRPS.

I do not have all the answers, but together we can drive awareness, improve research, and help others struggling with CRPS. Please share with me your ideas on how we can promote greater awareness of CRPS.  You may email me anytime at [email protected].

CRPS Awareness Day 26: The Importance of a Walk

Participants at this year's Long Island walk exemplify the importance of walks for CRPSBy 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

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.

Members from the Long Island Walk committe on stage with Jim Broatch at this second CRPS walkAfter 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

Event Items:

  • 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!

A Halloween Tale for CRPS With a Fun Message

Samantha writes a special Halloween story about CRPS and what is coming up after Halloween for awareness month
Halloween a Few Years Ago

Written by Samantha Anderson

‘Twas the day of Halloween, and all through RSDSA,

Anticipation was occurring, for another important day.

While others prepared costumes of Wonder Woman and Zeus,

Samantha was writing a Halloween blog, although for another use.

Tonight, she would dress as a unicorn in full,

To pass the trick or treaters candy by the bagful.

The clock will strike midnight, and a new month will arrive,

Just in time for a new campaign to thrive.

The first of November means it is the time,

To shed some awareness through story and rhyme.

A new blog will be posted every day,

For members of the RSDSA community to relate to in some way.

Tips, tricks, and stories we hope will compel,

Other readers of our blog to write for us as well.

Thirty different stories will be shared right here,

For you to repost for those you have near.

Stories will supplement our events through the weeks,

If you haven’t seen them, be sure to take a peak!

That’s right, RSDSA community! We will be featuring a new blog or vlog every day for you to read and share. Why? Because tomorrow starts CRPS Awareness Month! If you would like to submit a blog for consideration, please send it to [email protected]. If you haven’t seen the events coming up this month, head over to our events page to see what is to come. We think this is going to be a wonderful awareness month that will help us relate with one another and will help others gain more insight into RSDSA’s mission and the lives of those affected by CRPS. We could always use more than thirty blogs/vlogs, as we can post multiple OR save them for a future #TheTuesdayBurn.

Want to share what you’re doing to make this November the best CRPS Awareness Month ever? Send us a post on Facebook or a Tweet using #CRPSAwareness17 #ThisIsCRPS. Get your voice heard. When our voices come together, they create a beautiful harmony that can be heard across the world.

If you cannot make it out to one of the CRPS Awareness Month events, please know that sharing these events and helping get the word out and obtaining donations helps RSDSA reach our initiatives. We are excited to try new things this awareness month!

Have a happy and safe Halloween and we will see you all back here tomorrow for CRPS Awareness Month!

PS. If you are Facebook savvy, you will notice that our new filter for CRPS Awareness month goes up tonight on Facebook. Just search RSDSA when adding a frame to your picture! There are two available.

RSDSA: The People and Programs Behind the Website

RSDSA's executive vice president, director Jim Broatch with doctors Terri Lewis and Pradeep Chopra. All work towards CRPS progressBy Jim Broatch, MSW, Executive Vice President, Director

With CRPS/RSD Awareness Month approaching, we wanted to feature a message from our Executive Vice President and Director, Jim Broatch. So many people rely on RSDSA for resources. Here at RSDSA, we want to be able to best help you and best support you. We want to create a hopeful environment. Every day, we look to see what we can do better for our community. Jim Broatch too the time to write up a bit of what we do daily. We will continue to move towards progress. Please join us in shedding more light on CRPS/RSD, not only in the month of November, but every month of the year.

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 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. 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 here.
  • 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, [email protected]. 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 and we have also complied hundreds of peer-reviewed journal articles in our web library.

  • Philip Getson, a New Jersey physician who has treated hundreds with CRPS is featured in two free accredited courses for physicians, psychologists, and nurses
  • We also have developed a ketamine protocol for emergency departments on how to manage CRPS flares
  • 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.

Please consider making a donation to RSDSA today!

A New Month, An Almost New Season – What’s Coming in CRPS/RSD

Fall has arrived in the CRPS RSD community and we have a lot coming up. See our upcoming events and how you can help us here!I can’t believe it is September already! Before we know it, the leaves will start falling, pumpkins will start glowing, and it will be sweater weather (at least here in New England). Not only do all of these amazing things happen, but this is when our events really start to kick up. Woohoo!

We’re starting September off with a bang. This coming weekend, we will be in East Meadow, New York at Eisenhower Park for the 2nd Annual Long Island CRPS/RSD Awareness Walk. This event is going to be spectacular, as the committee members have worked tirelessly to put together a great day. There will be raffle items, crafts, fake tattoos, a barbeque, and of course an environment of hope and support on top of the walk. While online registration is closed, you’re welcome to bring your team down on Saturday morning for walk-up registration. For more information, you can visit their FirstGiving page by clicking here.

If Long Island is close, but just a little too far, we have another fabulous event the next weekend. This will be the 5th one of these walks. The 2017 CRPS/RSD Awareness Walk at Cooper River Park in Pennsauken, New Jersey is always a fun time. There will be music, fun, and another environment of hope and support at this walk. This fun-filled crowd makes every walk a great time. Help them celebrate this major milestone walk! While online registration is closed, you can walk-up and register the day of the walk. For more information, please visit the FirstGiving page by clicking here.

We’re continuing to move about the east coast as we travel to Easton, PA for Knock Out Pain 5K and 1 Mile Family Roll and Stroll. This event is put on by an entire family that has come together to support their loved one with CRPS, as well as the entire CRPS community. We are sure this is going to become an annual event. Help support this event by clicking here! Don’t miss out!

Following these fun-filled walks are two golf events in October. The first is our Longest Day of Golf. On October 2, we intend to have a golfer taking to the green to complete as many holes of golf as possible. We are looking for per hole pledges and one-time donations. If you’d like to make a one-time donation, you can donate by clicking this link. If you’d like to make a pledge per hole and pay your pledge amount times the holes completed, please email Samantha at [email protected]. From there, we are cruising on over to Galena, Ohio for the 2nd Annual Tame the Pain Golf event. If you know golf fanatics, encourage them to sign their teams up for this day of golf. There are prizes, raffles, lunches, team pictures, and a full day of golf for our participants, all for a good cause. You can find out more by visiting the Tame the Pain page here.

This is where we need your help. November is CRPS Awareness Month. We currently have a few walks scheduled, but we want to know what you want to see. What do you expect from RSDSA? Is it an event? An online awareness campaign? Vlogs? Blogs? Merchandise? Let us know what you want to see from us. If you want to plan an event on our behalf, be sure to contact us at [email protected]. We want to serve the CRPS/RSD community well this fall and make each and every one of you proud. Won’t you help us?

CRPS Retreats and Gatherings – The Positive Impact of the YA Retreat

A group picture from our retreat for young adults with CRPS, which left quite a positive impactWritten by Guest Blogger Melissa Lanty

RSDSA is focusing on how we can better serve the community, especially with November (CRPS Awareness Month) quickly approaching. One of our young adults contributed this blog shortly after our first young adult weekend, which was a great success. Read what Melissa has to say about how this weekend impacted her! Be sure to keep an eye on our events calendar for all things CRPS coming up!

The first time I heard of CRPS/RSD was when my cousin, Ken, was finally given a diagnosis for the intense, burning pain he had been experiencing.  By the time the doctors figured out his diagnosis it already spread, jumped, and did all the horrible things this disease can do.  I saw the scariest form of RSD/CRPS through my cousin, so when I was diagnosed with the same disease I was terrified.  I joined support groups and found pages to follow online, but most of the time I met with people they were all in very different life stages than me, and the advice I was given was often about what I should give up, what I needed to give into, how to adapt to the fact that I am now disabled.

When I got the RSDSA newsletter in my mail and saw the page for a young adult with RSD/CRPS retreat, I immediately went to the website and signed up to go.  It wasn’t until later, when I realized it would be a 4 hour drive, that I started to worry it would be me and maybe two other people sitting around talking about all the things we used to do.   I couldn’t have been more wrong.

I arrived at the beautiful Shawnee Inn on the Delaware River Gap, after getting myself lost for only 10 minutes, and met 9 other amazing young women with RSD/CRPS.  After throwing my stuff in a room, I joined the girls with the basic intros, where we are affected, swapping stories of what we’ve tried, thought about trying, and etc. about this disease.  After talking for a while I realized that this felt nothing like the support group meetings I have been to.  Instead of talking about what we can no longer do, we all talked about things we do despite this illness.  We laughed a lot as we shared our stories and experiences, by the end of the weekend my chest was actually sore from all the laughing we did.  For the first time since my diagnosis I met other people who deal with CRPS in a similar way as me.  People who work a full time job, go for hikes, kayak rides, boat, swim, travel, and push through the pain like I do.  We shared stories of bad flares and doctors who didn’t believe us, like I had with others I had met, but we also talked about college experiences, traveling, working full-time being on our feet all day, doctors still treating us like children, and so many other things that didn’t really apply with others I had met with RSD/CRPS.

When the weekend was over, I was sad to head back home and leave the group.  Even though we had just met it felt like we had known each other for years.  I sincerely hope there will be another retreat for this group again in the future.  I look forward to more adventures with these women, and hopefully others to join us too.  I’ll have to remember to be ready for anything, because this group lives life to the fullest for sure.