Gobbling for Grace

 

On November 27, 2014, Corey ran the 10K Turkey Trot in Detroit, MI to help raise funds and awareness for dup15q syndrome, the genetic disorder that affects his daughter, Grace.  Corey wanted to thank Dup15q Alliance, whose goal is to make a difference in the lives of children and families affected by dup15q syndrome. With the help of donations from our supporters, we will continue to make strides towards a brighter tomorrow.  

Corey (Dad) 

I started running 6 years ago, soon after we learned about Grace’s diagnosis.  I grew up playing sports, but never really embraced running.  I found running to be great therapy for the mind, while also helping me to stay in somewhat good shape.  The Turkey Trot is held on Thanksgiving Day every year.  Six years ago it was my first race.  I chose this race because it's on Thanksgiving Day, and I am thankful for all the help we have received from family and friends.  I am also thankful for Dup15q Alliance, as they make a brighter future for our kids. So by running this race I want to help Dup15q Alliance raise money so they may help families like ours and give support where it is needed!  

Grace 

Our daughter, Grace, has a rare chromosome disorder called chromosome 15q11.2-13.1 duplication (dup15q) syndrome, otherwise known as idic(15).  Children with this rare chromosomal disorder are born with extra DNA in their body’s cells. Dup15q children range from mildly to severely mentally disabled. They may also experience other neurological, physical and behavioral disorders such as autism and/or seizures.  Some children are non-ambulatory, while others are quite active.

Grace has an autism spectrum disorder.  She has many words, but she has a hard time using them to communicate.  Sometimes we use a special picture book to communicate with her, but the language barrier leads to much frustration for Grace.  Grace is a very active young girl.  She like to swim, ride her special bike, run around, ride horses and jump on her small trampoline.  Grace really enjoys music and music videos.  She also enjoys books sometimes before bed time.  

What is dup15q?

Dup15q syndrome is a rare genetic disorder with symptoms including global developmental delays, autism and seizures. It is a clinically identifiable syndrome which results from duplications of chromosome 15q11.2 -13.1. Grace has idic(15), or an extra isodicentric chromosome 15. For more information, click here.

Who is Dup15q Alliance?

Dup15q Alliance is the only U.S. organization whose sole focus is providing support and promoting awareness, research and targeted treatments for dup15q syndrome. For the past twenty years, Dup15q Alliance has been actively involved in raising awareness, fostering medical research and most importantly, providing support to families like ours.  Since the beginning many exciting things have happened because of the generous donations received by many kindhearted and caring people. 

Each year Dup15q Alliance continues to advance its mission of scientific research into chromosome 15q11.2-13.1 duplication syndrome. In the last few years Dup15q Alliance has facilitated the creation of nine dup15q clinics in major medical centers, sponsored several research projects and held scientific and family conferences.  By funding research, we hope to see many lives changed for the better.  The Alliance has created an international registry to allow research groups easy access to a database of vital information about our children. Many autism-related disorders stem from problems with genetic imprinting, leading researchers to propose that this might contribute to the disorder. Dup15q Alliance has funded the creation of a mouse model with increased levels of UBE3A, a key gene in dup15q syndrome. Our hope is that this will lead to targeted treatments specifically for dup15q syndrome. 

Dup15q Alliance is a 501(c)(3) organization and donations are tax-deductible as allowed by law.