For parents of special needs kids, the FIGHT is 24/7. No one should have to FIGHT alone.
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Every parent FIGHTS for their kids. For parents of special needs kids, the FIGHT is 24/7. Even further, parents of special needs children who have rare diseases fight to even be heard and recognized. For families affected by Dup15q Syndrome, The Dup15q Alliance is in their corner for the FIGHT. Together, our voice is loud!
There has never been progress in any disease state without the push of the parent and support community. As part of a larger organization, we can work together to take action and drive progress.
On 5/18/2019 we our hosted our second 24 hour BIG GIVE live stream event. Live streams included Dup15q doctors, researchers, and parents, to those who have helped build the alliance. It was a day of sharing stories, spreading awareness about dup15q syndrome and answering questions.
Dup15q syndrome is a rare genetic disorder with symptoms including global developmental delays, autism and seizures. It is a clinically identifiable syndrome which results from duplications of chromosome 15q11.2 -13.1. For more information on dup15q syndrome, click here.
Dup15q Alliance is the only U.S. organization whose sole focus is providing support and promoting awareness, research and targeted treatments for dup15q syndrome. For more than twenty years, Dup15q Alliance has been actively involved in raising awareness, fostering medical research and providing support to families affected by dup15q syndrome.
Many exciting things have happened because of the generous donations received by many kindhearted and caring people.
Each year Dup15q Alliance continues to advance its mission of scientific research into chromosome 15q11.2-13.1 duplication syndrome. In the last few years Dup15q Alliance has facilitated the creation of nine dup15q clinics in major medical centers, sponsored several research projects and held scientific and family conferences. By funding research, we hope to see many lives changed for the better. The Alliance has created an international registry to allow research groups easy access to a database of vital information about our children. Many autism-related disorders stem from problems with genetic imprinting, leading researchers to propose that this might contribute to the disorder. Dup15q Alliance has funded the creation of a mouse model with increased levels of UBE3A, a key gene in dup15q syndrome. Our hope is that this will lead to targeted treatments specifically for dup15q syndrome.
Dup15q Alliance is a 501(c)(3) organization and donations are tax-deductible as allowed by law.