Our Story

The History of Duplication Cares….

While Williams Syndrome or the deletion of the 7q11.23 gene region had been studied for some time, the first known case of 7q11.23 Duplication wasn’t identified until 2004, when a young man in Canada became the first known case through microarray genetic testing. The following year, the first case in the United States was identified in a young girl in Texas with a handful of additional families being identified in the following months.  As each family received the diagnosis, parents were given similar information; this is the first child with the duplication their doctor had treated, and the doctor was sorry, but there wasn’t very much information available concerning the duplication. While it felt wonderful to finally have a name for all of the challenges the child had experienced up until that point, it was frustrating to not have any other answers or direction.

Parents took to the internet in search of information, resources, and any possible thread which might help them find support and treatment for their child. Through the Unique Organization based out of the U.K., and Texas Children’s Hospital in the USA, families began to register and find one another.

Three mothers from across the United States (Jennie, Cheri, and Susan) connected and began an email support group known as “7q Dup Group”. A yearly newsletter was developed and information and resources began to be shared among families.  Another mother (Patricia) was then added to the group.  She formally registered Duplication Cares as an official 501c3 non-profit. At that time, the 7q Dup Group and Duplication Cares joined forces to support 7q11.23 Duplication families and to increase knowledge and awareness of the duplication not only in the medical community but in the world.

Through the years, Duplication Cares has provided a forum for 7q11.23 Duplication connections throughout the world. What started out as a handful of families has grown to several hundred known cases in every corner of the world. Relationships have been built with leading researchers and families from Duplication Cares have been involved in research which will pave the way for future 7q11.23 individuals. Through this collaborative effort, newly diagnosed families will have an arsenal of information, including detailed gene review information and characteristic profiles. Families are able to connect and given opportunities to network with others on their same path.

It is the goal of Duplication Cares to continue to provide support and information to families and the medical community regarding 7q11.23 Duplication Syndrome. Please join us in our efforts to do so by joining Duplication Cares and donating to this important work.