On October 12th, John Parker ran the Chicago marathon to raise awareness of dup15q syndrome. His goal was to raise $100 for each of the 26.2 miles in the race, but he ended up raising almost $5,000!! Way to go, John!
I am a Chicago native that has recently discovered the joys of running and have always had a goal of completing the Chicago marathon. This year I finally felt up to the task, but knew if I was going to do it, I wanted to help raise awareness for an organization. I chose a small organization because there are many big ones already getting plenty of funds donated to them. My brother mentioned working with Dup15q Alliance because he knows Riley’s parents through work. After meeting Riley's mom, I knew this was the perfect fit. I look forward to the opportunity to teach more people about dup15q syndrome and to raise some money to help the mice initiative! I think it is fantastic that Dup15q Alliance is made up of volunteers and that 99% of every dollar raised will go directly to helping fund research and other programs sponsored by Dup15q Alliance.
Riley will be 11 years old when John runs the Chicago Marathon. Riley was 10 months old when she was diagnosed with dup15q syndrome. We will never forget the day we met with the geneticist who essentially handed us a print out from the Alliance's website and told us he didn’t know much about this chromosome. Soon after meeting with the geneticist, we saw a developmental pediatrician who told us to expect Riley to have severe mental disabilities and that she may never walk or talk.
About a year later we went to our first Dup15q Alliance conference. It was overwhelming to meet other dup15q individuals and their families, but we walked away knowing that we were not in this alone. Fast forward 10 years later to today; Riley loves taking walks, is learning to ride a bike, communicates with an assistive tech device, swims, bowls, cooks and loves to sing and dance.
We are so thankful to the Alliance for providing the support and information we need to us to help us make Riley the best she can be. Most individuals with dup15q are affected with seizure disorders so research is imperative to determine best treatments for our kids. We had thought we may escape the seizure aspect; however, Riley did develop a seizure disorder 2 years ago. We are looking forward to visiting one of the dup15q clinics, and are so excited about research that is underway regarding seizures as well as general treatment for those affected by dup15q syndrome.
Thank you, John, for fundraising for our organization and also for bringing greater awareness about dup15q syndrome to our community! We were thrilled to cheer you on!
Dup15q syndrome is a rare genetic disorder with symptoms including global developmental delays, autism and seizures. Dup15q Alliance is the only U.S. organization whose sole focus is providing support and promoting awareness, research and targeted treatments for dup15q syndrome. In the last few years Dup15q Alliance has facilitated the creation of nine dup15q clinics in major medical centers, sponsored several research projects including the creation of a mouse model and held scientific and family conferences. Dup15q Alliance is a 501(c)(3) organization and donations are tax-deductible as allowed by law.