In the past five years, Dup15q Alliance has facilitated the creation of nine dup15q clinics in major medical centers around the United States. These centers of excellence provide the very latest treatments specific to dup15q syndrome.
We’re going on a virtual road trip this summer to raise money to improve and expand our network of clinics.
It’s a long journey – 6,337 miles. Each $10 donated to Dup15q Alliance sponsors one mile of our adventure.
Dup15q syndrome is a rare genetic disorder caused by extra genes from the 11.2-13.1 region of chromosome 15. Individuals with this disorder often have autism, seizures, hypotonia, gastrointestinal issues, anxiety and attention disorders, and global developmental delays. Parents have a difficult time finding information and care specific to the complex medical issues found in dup15q syndrome due to it's rarity. Often medical providers have never before treated anyone with dup15q syndrome. Complicating matters, the epilepsy and autism commonly found in dup15q syndrome differ from their idiopathic counterparts. This makes it vital for our families to have trusted medical resources with the knowledge to create the best possible lives for those with dup15q syndrome.
The dup15q clinics provide comprehensive health care for individuals with dup15q syndrome. Physicians from the various clinics collaborate to create the best evaluation and treatment protocols. Children with dup15q syndrome often have a difficult time with even small changes to their routine. Medical visits can be very traumatic. Staff at the dup15q clinics work to maximize the results while minimizing the disruption to the lives of these developmentally-disabled children.
Our families visit the dup15q clinics for the exceptional medical care, and they also have the opportunity to participate in a variety of research studies. The clinicians are continuously studying the latest findings in dup15q syndrome. For example, the Los Angeles clinic is home to an autism communication study and our Memphis clinic studies interstitial duplications. Results of the studies are shared among the clinics.
Our hope is that one day, each of our families (now over 1,000!) will be able to visit a dup15q clinic. Not only would we love to add additional locations, but we are working to connect all the clinics with one centralized database. Communication and data compilation are vital to better understanding dup15q syndrome and which treatments work best. While our immediate aim is to improve the current lives of those affected by dup15q syndrome, our hope is that one day be able to create targeted treatments for dup15q syndrome.