November 20, 2012
My son was diagnosed with CdLS when he was born 11 years ago. The information I found on line was very scary. The foundation provided real information, and helped us learn the truth about what to expect. They got us in touch with experts who could help, and get us connected with other families who share this CdLS journey. We are eternally grateful for all they have done to help us and so many other families. The opportunities provided to meet with other families has been a true blessing. The staff is very compassionate and kind and committed. They'll even provide information directly to your doctor, and have professionals who will be happy to communicate with your child's providers.
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MY ROLE:Client Served