Christianson Syndrome (CS) is very rare with less than 100 cases reported worldwide to-date. CS only affects males and it is a permanent condition with symptoms that include severe mental retardation, delayed development, absence of speech, problems with balance and coordination. Affected individuals have a happy demeanor with frequent smiling and spontaneous laughter. They also have a life expectancy of less than 30 years.
In 2011 the Christianson Syndrome Association (CSA) was founded “To advance the awareness and treatment if Christianson Syndrome through education and information, research, advocacy, and support for individuals with Christianson Syndrome, their families and other concerned parties.”
On June 27-29, 2013, the first-ever Christianson Syndrome (CS) conference was held in Providence, Rhode Island. The conference was put on by CSA with the objectives of:
- Meeting other families and people affected by CS.
- Discussing where CSA goes from here
There were a total of 63 conference attendees including 11 CS boys from 10 different families along with family members, caregivers, conference volunteers and 16 people from the medical community. The conference was a great success as evidenced by all the positive feedback and comments received from the participants. CSA would like to send a special thank-you to RLG International for helping make the conference possible.
Additional information on CSA can be found on their web site: www.csa-cares.org.
“What can I say about the CSA Conference? Words seem so inadequate to describe this life changing experience. We came as strangers and left as family...“