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June 27, 2013

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June 27, 2013

When my daughter was 5, I located literature that said life expectancy for individuals with CdLS was 5 years old. That was frightening news and fortunately someone led me to the Foundation. From Foundation staff I learned that this information was very dated and within a week was on my way to a CdLS Conference to learn all I could. There I met the most wonderful staff and doctors who were a wealth of information on the syndrome and helped me understand important screenings and treatments that I should pursue for my daughter. From that first welcoming call, I've felt the staff had my daughter's best interests at heart and I know they convey that same concern and caring to all who call. They indeed provide a lifeline when people most need one.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

November 28, 2012

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November 28, 2012

The Cornelia de Lange Syndrome Foundation has been an important part of our lives since our son was diagnosed at birth with CdLS 21 years ago. They have been our only source for accurate and current information about all aspects of the syndrome. They have provided us a sense of family in what can feel like a very isolating life. They have been our lifeline through the darkest days and helped us through so many challenging times. They are professional but warm and caring. They continue to actively research all aspects of the syndrome so that families can make informed decisions for their loved ones.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

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3 hours of volunteer time for this nonprofit will...

Spread the word about CdLS and save a child's life in the process, fundraise to help the Foundation provide assistance to families or provide education to healthcare professionals. Volunteer