Project Report
| Mar 22, 2016
Thank you for helping Max!
By Kim Maring | Operations Manager
![Max getting an EEG at the dup15q clinic.]()
Max getting an EEG at the dup15q clinic.
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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Jul 23, 2015
Thank you for helping our clinics!
By Kim Maring | Manager
![Did you know?]()
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!!
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Mar 24, 2015
Thank you for helping Annabel
By Kim Maring | Manager
![Annabel]()
Annabel
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 Annabel...she's eight years old and has dup15q syndrome. She sees Dr. J, a world-class neurologist at UCLA, who was so impressed with what Dup15q Alliance was doing that she joined the Alliance as a scientific advisor. Then Dr. J. got even more involved, opening up a dup15q clinic at UCLA, one of nine that the Alliance has facilitated in the last two years. Dr. J. went a step further, developing an autism study focused on kids like Annabel. Over the last couple months, Annabel and her mom have been going to Dr. J.’s lab twice a week to work with her team. Together, they've figured out ways to reduce Annabel’s anxiety and improve her communication. She’s a happier kid. And that study was funded in part by Dup15q Alliance. It’s just one small example. Your donations are truly helping to improve the lives of so many kids like Annabel!
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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