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Cindy65

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Cornelia de Lange Syndrome Foundation, Inc.
November 20, 2012

My son, David, was going through a very rough time several years ago. I talked at length with the folks from the foundation. They hooked us up with a national expert who then spoke directly with David's local doctor. The foundation is a central place of up to date information, support, and connections. More recently when my son went into the ER, the resident physician stated that he didn't know that much about CdLS and he wanted to look it up before he decided on any more treatment. Because of the foundation he came back to say that even though it looked like a behavioral episode, a complete medical work up was indicated because behaviors are the result of underlying medical conditions. David had a medical problem which required surgery that night. The foundation is very responsive to people's concerns, and questions.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served