Dup15q Alliance

Dup15q Alliance is a nonprofit 501(c)(3) corporation. Originally founded under the name of IsoDicentric 15 Exchange, Advocacy and Support in 1994 by Donna Bennett, mother to Joshua (a young man with idic(15)) and Brenda Finucane, MS, LGC, who was then the Director of Genetic Services at Elwyn Inc., as a list of 13 families raising children with chromosome 15q duplications, the support group grew and in 2004 it was officially incorporated into a nonprofit organization.

The organization’s name was changed in 2011 to Dup15q Alliance to encompass the variations of the disorder known as chromosome 15q11.2-13.1 duplication syndrome. Today, there are almost 1,000 families from around the world affiliated with Dup15q Alliance. The organization is a mostly volunteer run organization supported by grants, donations and many hours of volunteer effort.

Our Mission

Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome.

Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.

DUP15Q ALLIANCE PROVIDES INFORMATION, EDUCATION AND SUPPORT TO FAMILIES THROUGH . . .

Newsletter

The Mirror is published quarterly to educate families about duplications of chromosome 15q, share family stories, and provide information about treatment options and current research.

Parent Match Program

Dup15q Alliance matches parents seeking support with parent mentors who can provide emotional support.

Regional Family Gatherings

Dup15q Alliance supports small regional meetings for families to network, share resources and support.

International Conferences

Dup15q Alliance family conferences are held every other year to provide families with an opportunity to meet and learn about scientific and treatment advances.

Social Networking

The BigTent online community brings together those affected by dup15q syndrome to share information, stories and ideas.  Families and individuals with dup15q come from a wide range of backgrounds and are dealing with a variety of day-to-day issues. We are here to make friends, support each other and help do our best for the ones that we love.

This online community is available to registered members of Dup15q Alliance.

The official Dup15q Alliance Facebook Page can be found at Dup15q Alliance. We also facilitate a parent-only Facebook page at Dup15q Alliance Parent Support Group.

The official Dup15q Alliance Twitter Page can be found @dup15q.

PROMOTING RESEARCH AND HOPE FOR EFFECTIVE TREATMENTS THROUGH…..

Scientific Meetings

Dup15q Alliance holds national research meetings on chromosome 15q to coordinate and promote additional research into chromosome 15q duplications so that one day targeted and effective treatments will be a reality.

Collaboration with Researchers

Dup15q Alliance works with researchers to connect our families with research opportunities and expand research into dup15q syndrome

Human Cell Line & Tissue Repositories

The Human Genetic Cell Repository at the Coriell Institute for Medical Research holds a collection of chromosome 15q duplication cell lines for use in research. Families are encouraged to donate cell lines to this collection.

Upon the death of an individual with chromosome 15q11.2-13.1 duplication syndrome, families are encouraged to consider donating brain and tissues of the deceased to the Autism Tissue Program to expand these vitally needed resources for research.