Why camp matters
Empower your child at our Scleroderma Kids Alliance Family Camp!
For children living with scleroderma—and the families who love them—camp offers so much more than a week away. It provides connection, confidence, joy, and understanding in ways that are often hard to find in daily life with a rare condition.
🌟 A Place Where Kids Truly Belong
Children with scleroderma often feel different, isolated, or misunderstood. At camp, they’re surrounded by peers who “get it.” This sense of belonging builds lasting friendships, strengthens self-esteem, and reminds every child that they are not alone.
🌟 Community for the Whole Family
Scleroderma affects the entire family. Camp gives parents and caregivers a chance to connect with others walking a similar path, share experiences, exchange resources, and receive emotional support from people who truly understand.
🌟 Joy, Adventure & Confidence
Camp is a place filled with laughter, challenge, and fun. Kids get to try new activities in an environment designed to be safe, supportive, and empowering. These experiences help build resilience and confidence that extends far beyond camp.
🌟 Education & Empowerment
Families can learn from experts, meet advocates, gain tools for navigating medical and emotional challenges, and discover new resources. Knowledge decreases fear—and increases empowerment.
🌟 A Break from the Stress of Daily Life
Camp gives families a rare gift: a chance to step away from appointments, treatments, and worry. It allows kids to simply be kids, and gives parents time to relax, breathe, and connect.
🌟 Memories That Last
The laughter, friendships, and shared moments at camp become memories that children and families carry with them long after the weekend ends. These memories anchor hope and strengthen community.
Highlights
- Group Activities
- Instant Community
- Empowering Activities
- Peer to Peer Connections
- Parental Support
- Joy and Laughter
- Lasting Memories
Testimonials
"When my mom said we were going to attend The Painted Turtle, I was unsure at first. I was nervous that we were going to go all that way (from New Jersey to California) and there wouldn’t really be anyone I related to. However, as soon as we got there, we were welcomed with open arms by our counselor, who showed us around. Our first activities we attended were arts and crafts and “the giant swing”. While I was on the swing, everyone was cheering my name, yet I had no idea how they already knew my name when I hadn’t talked to anyone. That night at dinner, we met our cabin and table mates, and I felt like I connected most with their daughter. She was very kind to all of the kids and was always trying to get everyone involved in what we were doing. One of my favorite parts of the weekend was the bonfire on the first night. I got to sit with all the other girls, and we watched funny skits performed by the counselors and roasted marshmallows for s’mores. That was the moment when I knew I was glad that we had come to this camp and that I would have a great experience there."
"Going to Painted Turtle was so much fun! I loved everything about it! I can’t wait to go back."
"My daughter, Emma, was diagnosed with Systemic Scleroderma in 2015. Since her diagnosis, our family has been involved with the Scleroderma Foundation by attending conferences and participating in the Stepping Out to Cure Scleroderma walks. While both of these events have been informational and provided a community connection, they were not focused on children.
When I first learned about The Painted Turtle Camp, I thought it would be a unique experience for my daughter to connect with other children with scleroderma. Because the disease is so rare, I worry that she feels isolated or alone in dealing with her struggles. The camp setting was inviting and welcoming from the moment we arrived. Our family was partnered with a counselor, who guided us around the camp and through the various activities.
Having a teenager with a rare disease is different than having a younger child. They are more aware of everything related to their disease. I appreciated that The Painted Turtle offered breakout
sessions for caregivers, teens, and younger children. This gave each group of people a time to connect with each other. For me, the Mom’s Breakfast was an informal, but powerful time for me to connect with other moms experiencing similar struggles. It wasn’t all about our children at that time, but how we as moms are handling or coping with the situations regarding our child.
I have nothing but great things to say about our experience. That weekend made me realize that our family is not the only one walking this difficult path. And while I wish I was able to meet these families under different circumstances, the people in the scleroderma community can be the sun you need when things seem dark."
This scleroderma camp may have been planned for my daughter, Devin… but in the end, it touched every single one of us. From the moment we arrived, it felt like we were stepping into a space where we could finally breathe—where we could put down our phones, forget about schedules, and simply be together.
What made the experience even more meaningful was meeting other families who truly understood what we’re going through. There’s something incredibly healing about being surrounded by people who share the same fears, hopes, and emotions. It reminded us that we’re not walking this path alone.
Devin was diagnosed with scleroderma 1.5 years ago, and watching her see—other kids facing similar challenges was powerful. It gave her comfort, confidence, and a sense of belonging that is hard to put into words.
Both of my kids had such a wonderful time that they’re already asking when the next scleroderma camp will be. To them, it wasn’t just a camp—it was a place where they felt understood, supported, and genuinely happy. We came to camp hoping for a little healing, but we left with so much more: connection, community, hope, and memories our family will carry forever.
Together, we can drive change. Your generosity strengthens our community and empowers our mission.
Scleroderma Kids Alliance is a 501(c)(3) nonprofit, EIN 39-4910742
809 Cuesta Dr, Suite B 1103
Mountain View, CA 94040
Email: [email protected]
Copyright 2025 By Web Work International
"We didn’t know what to expect from scleroderma camp or how our daughter would feel about it, but we are so thankful we went! We immediately felt at ease with the other families. Everyone was welcoming and open to sharing their experiences with scleroderma and how it has affected our kids and families. Our daughter made friends that will likely be lifelong relationships from near and far and we did too! We plan to go back every year to continue building friendships and make new connections."