I am Running for a Reason! Together we can support the Dup15q Alliance in their mission to provide family support, promote awareness, research and targeted treatments for those affected by Dup15q Syndrome.

I want to make the miles count as I Run for a Reason. I am running to raise awareness and funds for Dup15q Alliance. Getting the word out about dup15q syndrome is a key piece of the Alliance's mission. Their fundraising mission is simple: encourage personal philanthropy that helps underwrite research, potential treatments, and a variety of support opportunities for affected children and their families.

Our 10 year old daughter Renee was born full term on her due date August 13, 2008 with no complications. She was a quiet baby, rarely cried, ate and slept well and let anyone hold her. By eighteen months she was referred to a Children's Hospital pediatric developmental specialist for concern of delayed/missed milestones. She was late to roll over, sit, crawl and walk. She also didn't babble. No "mama". No "dada". Only quiet. She had blood drawn for a genetics test which came back positive for a chromosome abnormality. #15 chromosome was duplicated. We were not told much about how this would impact her long term as not much is known about this syndrome. It is called DUP15q. "DUP" for duplication, 15 for the chromosome affected and "q" for the area of the chromosome with the extra genes. Going forward she walked independently at 23 months. A little over 3 years of age she began speaking words. She is NEVER quiet now! She's in 5th grade this year. She hasn't shown ability in knowledge of letter/number recognition. Therefore doesn't read or write. Her interests are cats, baby dolls and pretend play. Her cognitive delays keep her at a much younger level but also likes typical 10 year old girl stuff like nail polish, changing outfits and being sassy. Her biggest milestone achieved to date is being daytime toilet trained since she was 9 years old. Several symptoms accompany this syndrome with the most prevalent being seizures, autism, global developmental delay, hypotonia(low muscle tone), GI issues(gastrointestinal)and sensory issues(sensitivities to light, touch, sounds) just to name a few. Renee is most affected with global cognitive delays. Which means she must have adult supervision at all times. She is not aware of danger. She doesn't process information quickly or effectively. Even though she has an extensive vocabulary it doesn't always help her communicate. She's not reliable to answer safety questions like "How old are you"? or "What's your phone #/address"? We most dread seizures which as far as we know she has not experienced. Sometimes hormones can be a trigger to onset. Raising money for research to continue testing drugs and treatments that are safe and effective long term to benefit Renee and others with this syndrome is what we hope will become a reality in the near future!

Just a small donation will go a long way to helping me meet my goal for DUP15Q ALLIANCE