About Us

Christianson Syndrome Association

About Us

Our son Andrew was diagnosed with Christianson Syndrome in August 2010. Dealing with this diagnosis has been extremely difficult for our family. Having a child with a disability is quite a journey; having a child with a disability that could end their life is devastating. We developed Christianson Syndrome Association for children, families and medical professionals dealing with this degenerative disorder. Our major goal is to help fund the much needed research to help better understand the roots of this little known disorder. We want to provide families with the opportunities to get the information they need to not only cope but to move on. We want to help families come together with other families affected by Christianson Syndrome to share their valuable experiences, information and laughter.

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Our Founders - The Nash Family

Our Board of Directors:

Deborah Nash - President

Janet Bakondy - Secretary

Kelly Kippes - Treasurer

What is Christianson Syndrome?

Christianson Syndrome is caused by mutations in the SLC9A6 gene. The mutations and complications from this mutation lead to neurological problems in those diagnosed with Christianson Syndrome. It is a very rare condition and the exact prevalence is unknown. It primarily affects the nervous system and becomes apparent in infancy. It is also frequently diagnosed as Angelman Syndrome. Although with further genetic testing can easily be corrected to Christianson Syndrome. It's characteristics feature delayed development, an inability to speak, problems with balance and coordination and difficulty learning to walk and stand. Most affected children have recurrent seizures that begin around age 1 or 2. Affected children have a happy demeanor with frequent smiling and spontaneous laughter.

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