Physical Health United Kingdom Project #29711

Support Miles for Myles (Dup15q Alliance)!

Project Report | Jun 10, 2019
Miles for Myles Summary

By Marlene Schwan | Administrator

Dear Friend,

You subscribed to email updates from Support Miles for Myles (Dup15q Alliance)! by Dup15q Alliance, a project on GlobalGiving. Here's the unedited update from the field:

Project Report Support Miles for Myles
By Marlene Schwan - Administrator

Dear Friend,

You subscribed to email updates from Support Miles for Myles (Dup15q Alliance)! by Dup15q Alliance, a project on GlobalGiving. Here's the unedited update from the field:

Thank you for supporting Miles for Myles
By Marlene Schwan - Administrator

Myles

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

Often, our parents run individual fundraisers that not only support Dup15q Alliance but help our parents earn conference fees towards the Dup15q Alliance family conferences which 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

Dup15q Syndrome has so many unanswered questions. The support of pre-clinical models of the disorder (mice and fly models), are the best way to find the answers we so desperately need. The care of the a patient with a rare disorder like Dup15q Syndrome is challenging and a multidisciplinary approach is necessary for improved outcomes. Dup15q Alliance supports 8 multidisciplinary clinics to provide the best clinical care and also collect as much information about dup15q syndrome as possible.

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About this project:

Support Miles for Myles (Dup15q Alliance)!

by Dup15q Alliance

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.

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