Project Report
| Feb 16, 2023
Thank you for helping a child visit a clinic
By Julie Murphy | Business Manager
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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.
Dup15q Alliance has facilitated the creation of 16 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 staff 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!!
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Sep 23, 2022
Thank you for helping a child visit a clinic
By Julie Murphy | Business Manager
![A dup15q family who has been helped by a clinic.]()
A dup15q family who has been helped by a clinic.
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!!
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Mar 16, 2020
Help Child with rare disorder visit a Clinic
By Marlene Schwan | Administrator
Thank you for helping a child visit a clinic!
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:
Leaders from our dup15q clinics will came 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!
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.
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