Send family to conference for rare disorder!

by Dup15q Alliance
Vetted

Summary

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.
$7,500.00
total goal
$1,340.00
remaining
57
donors
0
monthly donors
2
years active

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.

Solution

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.

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.

Resources

http:/​/​www.dup15q.org
Dup15q Alliance's website

Organization Information

Dup15q Alliance

Location: Fayetteville, NY - USA
Website: http:/​/​www.dup15q.org
Project Leader:
Dup15q Alliance
Fayetteville, NY United States
$6,160 raised of $7,500 goal
 
77 donations
$1,340 to go
Donate Now Add Project to Favorites

Help raise money for this important cause by creating a personalized fundraising page for this project.

Start a Fundraiser

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence

Snorkeler
Our
Impact

Woman Holding a Gift Card
Give
Gift Cards

Young Girl with a Bicycle
GlobalGiving
Guarantee

Sign up for the GlobalGiving Newsletter

WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.