Project Report
| Jun 22, 2018
Thank you for helping kids like Max!
By Ava Markoutsas | 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.
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Mar 29, 2018
Thank you for helping kids like Max!
By Naka King | Admin
![Max getting an EEG at one of our Clinics]()
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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Dec 27, 2017
Send a family to conference for rare disorder
By Elyse Linderman | Administrator
Hi GlobalGiving donors! 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 beacuase 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 to this 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 on 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.
Thank you!
Links:
Enjoying the conference
Hi GlobalGiving donors! One dup15q mom tells it best:
I still remember receiving the e-mail from my husband whith three words, "Check this out," along with a link to the conference. Could I possibly be reading it correctly? 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 beacuase 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 to this 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.
Our 2017 International Family Conference in Redondo Beach, California was a great success and your support was vital! 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 on dealing with similar issues every day and learn about cutting-edge research and treatments. Please support our project and pass this message onto your friends and family. Learn more about chromosome 15q11.2-13.1 duplication syndrome at www.dup15q.org.
Thank you!
The Dup15q Alliance Community
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