Dup15q Alliance is a nonprofit 501(c)(3) corporation. The community that is now known as the Dup15q Alliance was originally founded under the name of IsoDicentric 15 Exchange, Advocacy and Support (IDEAS) in 1994 by Donna Bennett, mother to Joshua (a young man with idic15) and Brenda Finucane, MS, CGC the Director of Genetic Services at Elwyn Inc. Starting as a list of 13 families raising children with chromosome 15q duplications, the support group grew. In 2004, the IDEAS community was officially incorporated into a nonprofit organization. To best reflect the variations of the disorder known as chromosome 15q11.2 - 13.1 duplication syndrome, the organization’s name was changed in 2011 to Dup15q Alliance. Today, there are over 2,000 families from around the world affiliated with Dup15q Alliance.
Dup15q syndrome is a neurodevelopmental disorder characterized by having an extra copy of a portion of chromosome 15 in the 11.2 - 13.1 region in combination with a number of symptoms that may include hypotonia and motor delays, intellectual disability, autism spectrum disorder (ASD), and epilepsy, including infantile spasms.
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