Child Protection United States Project #16973

Help child with rare disorder visit a clinic!

Project Report | Jun 20, 2019
Thank you for helping a child visit a clinic

By Marlene Schwan | Administrator

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You subscribed to email updates from Help child with rare disorder visit a clinic! by Dup15q Alliance, a project on GlobalGiving. Here's the unedited update from the field:

Project Report
By Marlene Schwan - Administrator

Thank you for helping a child visit a clinic!

By Marlene Schwan - administrator

Did you know?

Dup15q Alliance has facilitated the creation of nine dup15q clinics in major medical centers across the United States. These clinics are at the forefront of evaluation and treatment for the myriad symptoms that can occur in those with dup15q syndrome. For example, some children have very difficult to control seizures and the clinic staffs work to develop the most effective drug protocols for seizures in dup15q syndrome. Because it is such a rare disorder, local doctors often do not have any experience or knowledge on treatments specific to dup15q syndrome.

We are very thankful that you have chosen to help our clinics. Together we can make a real difference in the lives of those affected by dup15q syndrome!!

Links:

Visit our website for more information.

Did you know?

Next week, leaders from our dup15q clinics will come together to strategize and discuss the latest treatments for dup15q syndrome. They will also have the opportunity to meet four hundred family members who will be attending our family conference at the same time. It gives the families great hope to see how many professionals have dedicated their careers to advancing the science of chromosome 15q duplications. This would not be possible without the support you have given to our clinics! Thank you!!

Dup15q Alliance has facilitated the creation of nine dup15q clinics in major medical centers across the United States. These clinics are at the forefront of evaluation and treatment for the myriad symptoms that can occur in those with dup15q syndrome. For example, some children have very difficult to control seizures and the clinic staffs work to develop the most effective drug protocols for seizures in dup15q syndrome. Because it is such a rare disorder, local doctors often do not have any experience or knowledge on treatments specific to dup15q syndrome.

We are very thankful that you have chosen to help our clinics. Together we can make a real difference in the lives of those affected by dup15q syndrome!

Thank you for helping kids like Max!

By Marlene Schwan - Dup15q Administrator

Max getting an EEG at one of our Clinics

Thank you for your generous support of our project! Work on our network of clinics for individuals with dup15q syndrome continues! Dup15q syndrome is a rare genetic disorder resulting from a duplication of chromsome 15q11.2-13.1. Symptoms include developmental delays, autism and seizures. Finding answers about a rare disorder such as this is often difficult in small communities. We seek to spread awareness by increasing communication between the medical community and our families.

Meet Max. He visited one our clinics recently and was able to participate in a cutting edge study for kids with dup15q syndrome. By studying EEG data, we are hoping to learn the best ways to help improve communication and social skills in kids with dup15q syndrome and autism. Lessons learned at the clinics help the affected families improve their day-to-day lives. We are making a real difference in the happiness of these kids.

Please support our project today and help more families to visit a dup15q clinic! For more information on all we do, please visit www.dup15q.org. Together we can make a better tomorrow for all those affected by dup15q syndrome.

Links:

Dup15q Alliance

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Organization InformationDup15q Alliance

LOCATION: Highland Park, IL - USA
WEBSITE: http://www.dup15q.org
TWITTER: @dup15q

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About Project Reports

Project reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you can receive an email when this project posts a report. You can also subscribe for reports without donating.