Pediatric Pain Camp

10 Years of Helping Kids With Chronic Pain

June 9, 2025

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.

Hi, my name is Sue Pinkham, and I’m a member of RSDSA’s Board of Directors, a founding member and president of The Coalition Against Pediatric Pain (TCAPP) and a board member of Tyler’s Dream.

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.

How Camp Is Changing Lives For All Ages

December 1, 2015

By CRPS Warrior Candice Clifford, Volunteer from the Center for Courageous Kids Pediatric Pain Camp Session

Experiences which leave an impression on your heart are the ones that stay with you forever…

I ventured to Kentucky this past July to volunteer at the Center for Courageous Kids’ (CCK) inaugural Pediatric Pain Camp. I took a solo trip, not knowing what to expect but ready to have fun with the campers. To many, Kentucky seemed like a random place for this east coast girl to be traveling to. However, as I reflect back on my experience at CCK, there was nothing random about this trip, rather I’d like to believe it was serendipitous.

Working with children who live with chronic pain and/ or illnesses is a population which is very close to my heart. I went to school for counseling, and later received a M.S. in school counseling. However, I soon realized during my last year of graduate school that I could no longer ignore my fascination with the medical field and had to follow my passion. Volunteering at CCK was my first step in making this change in my life; I went down to KY believing this experience was going to either confirm or dis-confirm my career aspirations. Needless to say, after spending four fun-filled days with the campers and their families, hearing many stories, and speaking with some amazing advocates in the field, I without a doubt knew this is the population I would advocate for.

The only way to describe CCK is the “Disney of Camps”. The staff goes above and beyond to accommodate the campers and their families, they generously transported me to and from the airport, and went to extreme measures to ensure that everyone had a memorable time. I could go on and on about how much I love CCK, but you really have to experience the magic to fully understand what I’m speaking about. There is something special that surrounds the campus; allowing children to be a child first, not a symptom, or a diagnosis. Camp brings families together, and creates a bond that seems to grow even when camp is over. The sky is the limit, dancing is prescribed, and it’s totally normal to be laughing one moment and crying the next.

Ironically, I was also at CCK during my four year anniversary date of being diagnosed with CRPS. I’ve come along way in four years; I received both my B.S, and M.S, traveled to El Salvador on a service trip, and endured an intensive pain rehab program. Before going to camp I wasn’t very vocal about my chronic pain to the outside world. Letting people in is scary, but if there is something that someone can learn from my story then the suffering I endured was worth it. One of the biggest lessons I learned at camp, is being vocal about CRPS doesn’t mean you are making chronic pain your full story; being vocal, and advocating leads to more awareness, education,and earlier diagnosis.

Volunteering at CCK taught me more then I could ever provide my camper. There are times when I hear myself chanting camp songs and other times where I feel so incredibly blessed to have stumbled upon the RSDSA newsletter announcing the camp that I cry. Not only am I grateful that attending camp pushed me to work towards my passion of teaching yoga to kids who live with chronic pain conditions, and launching my website Empowering Roots, but it also unexpectedly led to me learning about my own health. After having conversations with two very special people and gaining knowledge from parents at the camp, I was diagnosed with Ehlers-Danlos Syndrome a month after coming home from camp

Needless to say a piece of my heart will forever be at CCK…You might not come home with a new diagnosis, but I promise your experience at CCK will be just as life changing.

When I saw RSDSA’s fundraiser Coins for Kids, I knew I needed to do my part to help more kids experience the magic of CCK. I quickly created a Facebook Event “Candice’s Coins for Kids” and informed my family and friends about my fundraising efforts. Additionally, I shared many of the videos that were created after the pediatric pain camp to show others how their donation would impact the kids and their families. Thus far I have raised $350 (not counting change). My heart is so full of gratitude for the generosity of others and I am excited to volunteer at CCK in once again this July. Hope to see you there!

CCK – We Feel So Good: A Reflection of Our Experience at the Center for Courageous Kids in Scottsville, Kentucky

July 21, 2015

By Samantha Barrett, RSDSA’s Special Events Coordinator

I have a confession to make- I have never been to summer camp. Or, at least I hadn’t experienced camp until this past week when I went to the Center for Courageous Kids, where there was a week for pediatric pain. This was made possible by a collaboration between The Coalition Against Pediatric Pain, RSDSA, U.S. Pain Foundation, Rock Out to Knock Out RSD, and of course The Center for Courageous Kids. It is amazing what we can do when we all work together. I was able to adventure to Kentucky to represent RSDSA at this camp and had some fun of my own!

The children and their families were able to partake in a few days of pure fun. The theme of the week was “Get Animated” and featured characters like the Minions, Baymax from Big Hero 6, and other popular animated characters. Each family was assigned a counselor or two to help them through their time at camp. The counselors were fantastic. Several of them are going to school for various medical degrees. They are the future of medicine. The kids all seemed to bond with their counselors instantly. As the week went on, the counselors seemed to become more and more interested in the rare conditions and diseases that the kids had. But, there was never a focus on being “sick kids,” only on the fun to be had. The kids were not required to participate in every activity. If they needed to go sit down or to go nap, they were able to do so.

There was archery, horseback riding, fishing, canoeing, paddle boating, cooking, and bowling, as well as woodshop, arts & crafts, beauty shop, a pool, a gymnasium, and an arcade. Those were just the activities that the kids could participate in daily. Each area had a water cooler for everyone to fill up their water bottles, as the heat was incredible. If it was an outdoor activity, there was also a cooler with cooling towels to help prevent overheating. It was perfect. The counselors kept making sure that their kid was hydrated and made sure that an adequate amount of sunscreen and bug spray had been applied. There was also a carnival, a movie night, talent show, and the Messy Games. The Messy Games seemed to be a highlight for everyone. Each family was assigned to one of the lodges at CCK- red, green, blue, or yellow. Before the Messy Games, everyone got paint each other’s faces with the color of their lodge. They all came out to the main court yard with their team flags, chanting their lodges various cheers. There were four stations for each lodge to go to. One station involved pudding, another station involved oatmeal, another involved shaving cream, and another was a mystery slime. The goal of the Messy Games: use each of the four stations to try to make your team the messiest. The messiest team wins. I stood in the “safe zone” watching everyone cover each other with everything to try to become the messiest. Parents, counselors, kids, and other CCK staff members were all laughing, chanting, and flinging the mess at each other. I couldn’t even tell you which team won; I just remember only being able to see people’s eyes after the games were over. After the games, they were all able to dump water over their heads to clean off. This water war was just as entertaining as the Messy Games.

The talent show was a nice surprise. There was some singing, some acting, and some musicians among other talents. The counselors helped out if their camper wanted to participate, whether it was holding their microphone for them, being background dancers, and helping keep everything as smooth as possible. These kids had some truly amazing acts, it just took the talent show to get them to expose these hidden talents. We all even got our own Playbill with the featured talent listed. We had our own Elsa, a mini Taylor Swift, a female Sherlock Holmes, and more!

Mealtime was the perfect time for everyone to bond. Everyone had the chance to sit together at the long tables. This is where everyone could chat, plan the day, vent, and just hang out. CCK was very attentive to the different dietary restrictions that some people had. Everything was labeled to say if it contained gluten, dairy, eggs, nuts, and other allergens. There was a separate area in the back where people could go to get the gluten free and/or vegetarian option for the day. Mealtime can be stressful for some, but not this time!

As I observed throughout the week, I almost forgot that these were kids that did not do things like this on a daily basis. What a blessing it can be to say that I sometimes forgot about my own disabilities as well. As camp-goer Emily Schellhammer stated: “Camp is amazing and there, you aren’t an illness or injury or anything. You are a name and a kid. You’re equal to the person(s) next to you. Here, no matter what, you fit in. You aren’t judged. Here you’re free and happy and know you are not alone.” Some of these families haven’t been able to bond like this in quite some time. Having people from all over the country created a network for the kids and their parents. A mother of two of the campers, Marianne St. Clair, said: “The camp experience provided our family a place to connect, exchange information, and develop lasting positive memories with other RSD/CRPS families. Smiles and laughter are the best medicine and although the journey was difficult to get there and home, the trip was so worth it for the children and mom.”

I look back on my week in Kentucky and tears instantly form. It was such a happy time. There was so much positivity and joy. I wish that I had been able to go to a camp like this when I was younger, although I’m sure I still would have ended up stuck in the middle of the pond in a paddle boat. It was truly amazing to get to know the kids, parents, counselors, and other staff members at CCK. Thank you to all who came out to participate and all who came out to help. This camp was a dream come true for everyone. This was a brainchild and dream of Sue Pinkham, so please join me in thanking her with the Sue chant that rang through CCK: Sue, Sue, Sue, Sue, Sue, Sue, Sue!!!

RSDSA is extremely proud to have been a part of this pilot year for the pediatric pain camp. We have high hopes for another camp experience in years to come. We know there are more kids out there that would greatly benefit from and enjoy this camp. If you would like to learn more about this camp, and/or how you could potentially help in years to come, please contact Sue Pinkham at [email protected] or (781) 771-2095.

Please consider making a donation to RSDSA today!

Learn More About the Camp for Courageous Kids

April 2, 2015

Do you remember sitting around the campfire and signing camp songs, roasting marshmallows and giggling with your new friends? It’s your first day of summer camp and you are so excited to be there, to join in all the activities: archery, bowling, arts & crafts, horseback riding, etc.

Fast forward 25 years to being a mom and/or dad whose child who lives in chronic pain – there are no summer camps for your child because he/she is “too complex.”

But now there is a summer camp for children living in chronic pain: The Center for Courageous Kids in Scottsville, Kentucky.

RSDSA, together with the US Pain Foundation and The Coalition Against Pediatric Pain (TCAPP), is sponsoring a camp July 14-17, 2015 for children ages 7-17.

The goals of the summer camp are fun, fun, and (you guessed it) fun! It is the first time we have ever found a camp for children living in pain.

The camp is totally FREE for all participants and one parent who will stay at the camp with his/her child. Please go to tcapp.org and fill out an application today! Space is limited.

Please consider making a donation to RSDSA today!