Project Report
| Feb 16, 2023
Thank you for sending a family to Conference
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.
One dup15q mom tells it best:
Three whole days dedicated to this condition, which my son had been diagnosed just one month prior? A month that shook us to our core, not only because we knew our life would neither be the same nor what we had thought it would be, but also because of the helplessness that even in the "Google-It" era it seemed there were few answers to be found.
Day One: It suddenly became so real, so fast. I looked up and saw a little boy who looks so much like mine. An arrow shot straight to my heart.
Day Two: As soon as I got to our room that night - head spinning - I could digest the day with one thought only: we had to enjoy every minute of our life because there would be no other way through this.
Day Three: I felt a deep sense of gratitude to the families of older children that had pioneered these efforts and to the Dup15q Alliance leaders who selflessly offered their time. The energy was powerful and uplifting.
Dup15q syndrome is a rare disorder and it is often difficult for families to find fellowship and resources. The conference provides a chance for families to connect with others who are dealing with similar issues every day and learn about cutting-edge research and treatments. Learn more about chromosome 15q11.2-13.1 duplication syndrome at www.dup15q.org.
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Mar 26, 2020
Send family to conference for rare disorder
By Marlene Schwan | Administrator
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:
Max getting an EEG at one of our Clinics
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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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 will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.
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Jan 6, 2020
Send family to conference for rare disorder report
By Marlene Schwan | Administrator
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:
Max getting an EEG at one of our Clinics
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:
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 will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.
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