POUR
Awareness & Advocacy
I was diagnosed with Systemic Scleroderma and Interstitial Lung Disease at age 8, making me 1 in 5 million children with this condition. Many don't realize scleroderma can affect kids, so I’m dedicated to raising awareness. I’ve organized holiday parades, family fun days, and local walks, and have accepted certificates proclaiming June as Scleroderma Month. One of my next gorals is to organize a group of Scleroderma kids to visit Washington, D.C. on Rare Disease Day to advocate for better medical and pharmaceutical coverage. I am also working with another scleroderma patient to create a scleroderma awareness coloring book which we hope to have finished in 2025. We'll sell the boos, and 100% of the proceeds will go to the Sophie Anne Fund, which helps with the travel expenses for kids to visit the scleroderma center at UPMC. As a teenager, this is just the start of my advocacy journey.
Holiday Parade
Each year I try to find new ways to bring attention to scleroderma in my community. In 2018 started the tradition of walking in a local holiday parade. Kids with scleroderma, as well as some of our friends and family joined us as we handed out Scleroderma bracelets and lip balm instead of candy!
Christmas Tree
After Covid I had to get a little more creative in ways to bring awareness to the disease without gathering in large groups. In 2021 I gathered a couple of friends, and together we decorated a scleroderma awareness Christmas tree in our towns Festival of Trees! We continue to decorate a tree each November making it a tradition among my friends!
Scleroderma Walks
Over the years my family and friends have come together to support me and bring awareness to scleroderma through events like walks. We come together and enjoy a morning in the sun to help other patients. Scleroderma walks can be a good way to raise money for research, but also to bring overall awareness to the public about the disease. Next year we will be joining a walk in the Greater Chicago area.
Info for Teachers
Every year my mom and I put together info sheets for my new teachers. We write something up that explains what scleroderma is, but also to explain my specific needs related to my disease. We include a brochure about the disease, and I try to always hand out a little awareness swag (or cookies!). This helps me educate the teachers, but it also gives them some information to refer back to as needed.
Cookies for Awareness
February 28th is Rare Disease Day; I had some scleroderma cookies made! My mom's friend made this cute awareness tag for me, which we attached to the cookies, and I handed them out at school. This was a great opportunity to share my story with classmates, teachers, and school administration. Other people shared their rare disease story with me! What a great opportunity to open a dialogue about scleroderma and other rare diseases.
Organizations We Work With
