Country Living Staff Visits Family Center

RhizoKids Conference Provides Medical Exams for Children with Rare Disorder

Golf Tournament Benefits Children’s Harbor

The RhizoKids Conference 2017, which was held on the Children’s Harbor Lake Martin campus July 19-23, welcomed 21 RhizoKids and their families from all over the world to Alabama. This annual conference organized by RhizoKids International is an opportunity for scientists to present findings from their research, and interview each family to obtain the medical history of their RCDP child.

Rhizomelic Chondrodysplasia Punctata (RCDP) is a genetic disorder that is a fatal form of dwarfism, and it is rare – affecting fewer than 100 children worldwide. Currently, there is no treatment and no cure for RCDP.

RhizoKids International was founded in 2008 by Tracey Thomas and Mary Ellis, two Alabama mothers, whose sons, Jackson and Ian, were both born in 2007 with RCDP – just five weeks apart in the same hospital. The mothers formed the organization to raise money to go toward research for a cure for their children and, in doing so, reached out to RCDP researcher Dr. Nancy Braverman for help. Dr. Braverman traveled from Canada to Alabama to examine their boys, and three other families brought their children to Alabama for exams as well. This initial meeting gave birth to the annual conference that has been held each summer since.

The children received an individual medical exam, performed by the world’s leading RCDP researchers, including Dr. Braverman (McGill University, Canada), who is the medical liaison for RhizoKids International, Dr. Mike Bober (A. I. duPont), Hong Brereton (John’s Hopkins), and Dr. Joe Hacia (University of Southern California).


Our unique Lake Campus is specifically designed to offer convenience and memorable experiences to families with special needs children. We are blessed to be in partnership with such a unique organization that has deep impact on the international level.

 

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