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 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.

Knock Out Pain Together – An Inspirational Story of Coming Together

Sarah Phillips-O’Steen is an ally to the CRPS community. Ever since she was 2 years old, she has been witnessing what CRPS/RSD can do to a loved one. Her father, Julian Phillips, has been living in pain since his daughter was toddling around. As Sarah will tell you, he’s always been good at hiding his pain, but she has never known him without it.

In January 2015, Julian took a terrible fall that sent him into one of the worst CRPS/RSD flare ups that he had ever experienced. This guided him into full body CRPS. While Julian was spending time in hospitals, fighting the pain, Sarah witnessed some of the grim realities that come with CRPS. Medical staff didn’t know how to handle a person in so much pain, never mind the fact that they even had the slightest idea of what CRPS/RSD was. Sarah decided enough was enough. While sitting by her father’s bedside during a ketamine infusion, she started researching awareness event ideas, primarily benefit 5k’s. She stumbled upon a 5K in Charlotte, NC that benefitted RSDSA- Fight the Flame 5K. Sarah then immediately reached out to them and established a friendship with the Stillitano family. Once Julian was released from the hospital, Sarah approached him and her family with the idea to do a 5K and to fundraise for RSDSA. Julian wanted to take it a step further and start a support group for those suffering from all types of chronic pain. Thus, Knock Out Pain was born. It is a full out family affair. Julian and Sarah’s mother work on the support group, while Sarah, her siblings (Craig and Hannah), and other family members work on fundraising and awareness. They held their first benefit that March in Trexlertown, PA.

For Sarah, RSDSA was a natural choice to donate to. According to Sarah, RSDSA has done and continue(s) to do some great things. When needing guidance to start this project, RSDSA Executive Vice President and Director Jim Broatch was there, supporting and helping her get the right contacts and start on the right foot.

Knock Out Pain 5K and 1 Mile Fun Walk will be taking place on September 17, 2017 in Easton, PA. This is their 3rd fundraising sports event and 2nd 5K. Last year, with their first 5K, they were thrilled with the 50+ participants and their hope is that they can double that figure this year. What makes this event stand out is that it’s the only 5K in the Lehigh Valley that benefits RSDSA AND it is a small family event. It is a wonderful demonstration of what happens when we are all able to come together to support a loved one in need. Sarah will tell you that the event is not a giant event that you’ll get lost in the crowd in, but it’s an event to bring people together and to make people aware of this disease that affects people worldwide, although little have heard of it. You can be the next Usain Bolt or you can be the polar opposite. All levels of runners and walkers are welcome at this event.

The overall goal of the 5K is to raise awareness for CRPS. That is the goal for the entire family. Sarah’s personal goal is to make her father proud and touch at least one person’s life. She hopes people walk or run (no pun intended) away from this 5K armed with knowledge that there are more diseases out there that impact people and their families that deserve time and attention, too! Sarah wants to make sure that people realize that diseases can be invisible and we all need to remember we shouldn’t judge anyone until we walk a day in their shoes.

Knock out pain together and join this event to help make changes in the lives of those with CRPS/RSDMaking it more of a family affair, Sarah has stated that she never would have started this had it not been for her husband supporting her through and through. They have an amazing 5K committee that includes friends of theirs on top of family- Rob, Aubrey, Mike, and Kathy. Other friends continue to support them behind the scenes by sponsoring, campaigning, web designing, graphic designing, and being a shoulder to lean on when times get stressful or emotional.

While Julian is Sarah’s number one inspiration, when she stops and thinks, she sees all of the other people and reasons that she puts on Knock Out Pain 5K. Her mother has dedicated her life to being by Julian’s side through surgeries, medications, frustrations, setbacks, and more and has continuously changed her own life around so Julian could have more of a “normal life.” Sarah states that her mother is an inspiration of what a true wife/mother/grandmother should be. Then, there are two men that have the same hopes, dreams, and desires as Sarah, which is that everyone will know of CRPS one day. Those men are her husband, Kyle, and brother, Craig.  They continue to push her and support the cause, all while working tirelessly with Sarah to make Knock Out Pain something. But, Sarah also does this for her kids and youngest sister, Hannah. The inspire her to set a good example of what a leader looks like. She wants to encourage them to set goals and achieve them, no matter what obstacles may appear.

Participating in awareness and fundraising events is important. Giving back to the cause that helps families and individuals affected by this monstrosity of a disease is important. Sarah likes to give back to those that need it. Both Sarah and her husband feel they have been blessed throughout their lives by the kindness of others, and now is the time to pay it forward.Running a Knock Out Pain event for CRPS awareness and fundraising

As Sarah stated, “What do you have to lose?” Join us at Knock Out Pain 5K on September 17, 2017. It will be a fun morning getting some exercise and/or meeting new people while learning more about CRPS. You can register for this event by clicking here. If you cannot make it out to the event, you can also give a general donation to this walk.

We are incredibly inspired by the entire Phillips/O’Steen family. Thank you to Sarah, Julian, and the rest of the family for taking on such amazing tasks within the CRPS/RSD community and for continuing to give back.  Help them help you and others with CRPS! Let’s Knock Out Pain together!

My CRPS Experience at the Young Adult Weekend

Jess was one of the young adults at our CRPS retreat. Read about her experiences and why events like this are so importantWritten by Guest Blogger Jess Henry-Cross

Jess was a participant in our very first CRPS Young Adult Weekend this past June. She was more than happy to write a brief blog about her experience and how it changed things for her. Why are events like this so important? Read about what Jess experienced to learn more.

Around 2:30 in the afternoon on Sunday, June 18th I found myself holding back a few (happy) tears.  I was driving home after spending the last 45 hours with a group of women who recharged me in a way I had never even dared to hope for.  I didn’t want the weekend to be over.

I signed up for the RSDSA Young Adult Weekend with one goal – to go kayaking on the Delaware River.  I figured that I would give myself bonus points if I met a person or two who I could have a good conversation with.  One of my worst habits is my constant expectation of disappointment, so imagine my surprise when I walked into this group of brave, beautiful, adventurous, determined, energizing, bad-ass rock stars.  This weekend blew my mind.  The instant connection and pure understanding amazed me.  I had no idea how powerful it would be to venture into a community where others don’t just get [CRPS] RSD, they have [CRPS] RSD.  I guess there really is something to those support groups I’ve heard about!

This ended up being a collaborative weekend where we all learned from and challenged each other.  Some of us learned what our limits are and some of us expanded our limits.  We had crucial talks on advocating for ourselves, whether it be in a doctor’s office, with an insurance company, on a college campus, out in the workforce, in a restaurant where the music is too loud, and even within our own groups of family and friends.  There were midnight talks in hotel rooms, the contents of which will never leave those four walls.  We shared and brainstormed tips and tricks for forming and maintaining relationships, self-care, transitioning from being a child with chronic pain to being an adult with chronic pain, sneaking into a wedding reception, and making the best s’more.  I’m so proud to say that we all found adventure in some form on the Delaware River.  Jess, who has been living with CRPS for 8 years, was able to fulfill her goal of kayaking in the Delaware during the young adult retreat

Over the last 8 years I have accumulated a lot of different things in my “living with RSD” toolkit.  I’ve managed to find some great doctors, I have friends and family that support me, and I have access to a constant rotation of various treatments that keep me moving and grooving (and hopefully some more kayaking).  I’ve come a long way from the darker days of my original diagnosis, but up until this weekend I was still too stubborn to admit that I needed to connect with a community that fully understood the burning pain I feel in my bones and the brain fog that steals my precious time.  I think my toolkit took a hint from The Grinch and grew several sizes to fit in this remarkable group of new connections.  I wish I could go back to freshly diagnosed 20-year-old me and tell her to do more than just ‘like’ a few Facebook pages and subscribe to a newsletter.  To anyone out there who has never reached out for support, this is your sign – do it!  To RSDSA – keep doing things like this.  Keep bringing us together.  The hugs may be gentle, but the support is fierce and life changing.

If you would like to donate to help make a Young Adult Weekend happen again, please visit!