On August 28th, Matt Dunne will participate in the Chicago Triathlon to raise awareness of dup15q syndrome in honor of Riley.
Checks made payable to "Dup15q Alliance" can be sent to us at P.O. Box 674, Fayetteville, NY 13066. Please note Matt Dunne or Chicago Tri on the check.
Riley's mom and my dad are cousins who also happen to live four blocks apart! I have had the pleasure of seeing Riley frequently in the neighborhood and on holidays (most notably on Christmas!). But it wasn't until recently that I learned just how much Dup15q Alliance helps Riley and her family.
Prior to mid-November, Riley suffered from up to 30 seizures a day. In November, Riley's parents took her to see a specialist at the dup15q clinic in Minnesota to try to help alleviate the seizures. Since then Riley has been seizure free! That in itself moved me enough to be proactive about raising awareness for Dup15q Alliance. Since the Rozovics family joined the Alliance, they have had access to doctors, support, research, etc. to help ensure Riley’s health and provide her with many opportunities that she otherwise might not have.
I ask you for your support as I raise awareness and funds for dup15q syndrome at the Chicago Triathlon! For more information on the Chicago Triathlon, click here.
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 to today; Riley is now 12, 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 so happy that the staff of the dup15q clinic has helped us to control her seizures. We are so excited about research that is underway regarding seizures, as well as general treatment for those affected by dup15q syndrome.
Thank you, Matt, for fundraising for our organization and also for bringing greater awareness about dup15q syndrome to our community! We cannot wait to cheer you on in the Chicago Triathlon in August!
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.