Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for dup15q syndrome. Symptoms of this rare genetic disorder include autism, seizures and developmental delays. Every two years we hold a conference for affected families to provide education on the latest treatments for dup15q and to create a sense of hope and community that is often difficult for our 1,000 registered families to find locally due to the rarity of the disorder.
What is the issue, problem, or challenge?
Dup15q syndrome is a rare genetic disorder caused by a duplication of chromosome 15q11-13. Individuals with this disorder often have autism, seizures and global developmental delays. Parents have a difficult time finding information on dup15q due to it's rarity. Dup15q Alliance provides education and support for those affected by dup15q and encourages research and targeted treatments.
How will this project solve this problem?
Our family conferences provide parents and caregivers with the opportunity to learn about the latest treatments and therapies for those with dup15q syndrome. We create a unique sense of community and understanding. Many of our families tell us that this is one of the few places they feel like they don't have to explain their children. There is a great sense of acceptance and camaraderie.
Potential Long Term Impact
Families attending the conference bring information back to their own physicians, caregivers and therapists, spreading a wealth of knowledge about dup15q. Increased awareness of dup15q syndrome will help future families who receive the diagnosis to receive information and support faster. Families who attend the conference gain perspective from those with older children and return home with a renewed sense of hope for their children.
Total Funding Received to Date: $5,319
Remaining Goal to be Funded: $2,181
Total Funding Goal: $7,500