The Coffin-Lowry Syndrome Foundation was created in 1991 when my then infant son, Davis, was diagnosed with the condition. I searched for information and found very little was available. I contacted the National Organization of Rare Disorders (NORD), assuming that maybe they would have a dozen or so families in the U.S. in their database. At that time, there was only one other family in the NORD database - they had a 22 year-old daughter. Communicating among ourselves, we eventually expanded this to a half-dozen families. We all said the same thing, it's too bad there isn't a support group. Someone should start one. Well, I thought, I'm someone. Maybe I should start a support group. And CLSF was born.
CLSF has been a great resource for families affected by CLS. It gives us a place to share much-needed information that just doesn't exist anywhere else. We have been instrumental in working with the research group in France that eventually identified the RSK-2 defect that causes CLS. It is by sharing what we know with each other that helps all of us more effectively help our children live the best life they can live. If you found this site to be useful, please consider making a donation.