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Nonprofit Overview

Causes: Health, Health (General & Financing)

Mission: Reaching Out, Providing Help and Giving Hope.

Cornelia de Lange Syndrome is a little-known genetic birth defect that causes children to develop slowly, both mentally and physically. With the help of hundreds of volunteers, the Foundation is able to provide personal support to every family who requests it.

Geographic areas served: United States

Programs: Publications, family service support phone lines, national family conferences, Foundation sponsored family gatherings across the country

Community Stories

14 Stories from Volunteers, Donors & Supporters

1

General Member of the Public

Rating: 5

Wonderful organization that is truly selfless, and works to better the quality of life for clients.

Jennifer574

General Member of the Public

Rating: 5

Excellent and informative organization. My sister has CDLS and they have provided support to our family for years now. My family still receives the pamphlets and information for fundraising. The information is key and helped us find the special doctors to treat her over the years. There has been a lot of progress since my sister was born 24 years ago.

General Member of the Public

Rating: 5

When my daughter was diagnosed at 18 months I was devastated. I was surprised the doctors didn't have much information to give me. My daughter didn't have teeth, barely crawled, didn't talk. I was told by the genetics clinic to put my child in an institute and start my family over. I was 30 years old, I had begged God for a child. By connecting with the Cornelia de Lange Syndrome Foundation, Inc. It changed my life. I knew I was in great company. The help the knowledge, the family welcome and education was spectacular.

General Member of the Public

Rating: 5

My niece has Cdls and the foundation has been very helpful with showing me ways to help with her care

Elyse5

General Member of the Public

Rating: 5

I have received information from CDL for many years. My daughter who has Cornelia Dr Lange syndrome is 46 years old. At the time she was diagnosed, there was very little information available. The foundation was a godsend to me. She lives in an excellent group home and is doing very well. She has workshop during the week and spends Saturday with me. The magazine that is sent regularly is full of information and I couldn't't be more pleased with the foundation. I give them my full appreciation and thanks.

Judi15

General Member of the Public

Rating: 5

Having a child with a disability changes your hopes and dreams forever. Having one with a disability no one has ever heard of puts a parent further from the curve and feeling really separated from the norm. This foundation is a safe harbor for parents. Cdls foundation provides the knowledge, the understanding of the difficulties and the support so desperately needed in the troubled times following a special birth and the subsequent years of difficult transitions.

Linda433

General Member of the Public

Rating: 5

Excellent newsletter with helpful information for parents, teachers and medical personnel.

1 Deborah125

General Member of the Public

Rating: 5

This is a tremendouslyrics supportive organization for children with CdLS and their families.

1 Ronda7

General Member of the Public

Rating: 5

I am an Auntie of a very special boy! The foundation has been fantastic in helping us understand and navigate life!

Jennifer383

General Member of the Public

Rating: 5

When a family - because the family deals with it, not just the child - has a diagnosis of CdLS many have never heard of it before and have no idea where to turn. It is a big, scary medical world for special needs parents and it is frequently overwhelming. Thankfully, The CdLS is there to help navigate the insanity and provide answers. Not just answers, but personal answers for where ever a family may be located. I have never had an issue with anyone being too tired to help me, or even not knowing an answer. This foundation is a lifesaver for those who frequently find themselves adrift in the sea of confusion when battling a new diagnosis. Without them, I can't even imagine where I would be!