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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

80 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

In a time of need, when all else failed to offer support and comfort, the Cornelia de Lange Syndrome Foundation was there for us. We reached out to them expressing our feelings of helplessness and despair. In them, we found the resources, support and sympathy that uplifted our hearts in feeling a sense of hope. It was through their prompt response, knowledge, professionalism and, above all, their sensitive attitude that we regained the strength needed to deal with our situation.

Client Served

Rating: 5

Having a child with a disability it's tough. Finding this organization was godsend. My daughter is now 19 years old and throughout the years having to deal with different medical issues have been challenging.I have been able to find answers and guidance from CDLS. Their newsletter and website have been extremely helpful!

1

General Member of the Public

Rating: 5

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

Client Served

Rating: 5

The CdLS Foundation does great things with limited resources. They have helped countless families with everything from education to medical needs.

Client Served

Rating: 5

We are so grateful to have the resources of the Cornelia deLange Foundation for our son, Sammy. Sammy, who has mild CDLS , transitioned to Kindergarten this year. Our school district initially did a short evaluation, and placed him 6-1-1 classroom, of which we disagreed.
I read all the information from the Foundation, and sent Sammy's IEP for their experts suggestions. We challenged the school district placement with the feedback from the Foundation, as well as many of their publications.
Sammy is now in a regular Kindergarten class, with a personal aide, in a charter school. Although it has only been a few weeks, Sammy is doing well and wakes up every day ready to go to school.
Thanks to the support and information from the CDLS Foundation, we were able to advocate and give Sammy an opportunity to achieve his potential.

Board Member

Rating: 5

The CdLS Foundation is the only organization of its kind, providing support, education, and resources for families and professionals providing care for someone with Cornelia de Lange Syndrome. The Foundations is organized, and highly effective in meeting the needs of CdLS caregivers from around the world.

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.

Client Served

Rating: 5

My son, Michael, was born with Cornelia de Lange Syndrome. The foundation has helped us when we were struggling through the beginning years of adolescence. Their resources and newsletters help us keep connected to new information available. They have been extremely helpful.

Client Served

Rating: 5

Always there when I need them. They put me in touch with medical experts as well as other parents who are living the same life.

For the past 23 years, the CdLS Foundation has been responsive to my and my family's needs. And because they fund research and collect stories from other families whose child(ren) are affected with CdLS, we have some idea idea what to look for when our daughter has medical issues that she cannot tells us about-she has no language.

Client Served

Rating: 5

The Cornelia DeLange Foundation was a Godsend for us when our daughter was born in 2001
The Dr's knew a little about the diagnosis , however we need much more information. We were in the middle of the grieving process (yes grieving) that you have after your child is born differently abled, when I finally felt able to call the number given to us by our Dr. The voice of the woman who answered the phone was compassionate, kind, and confident. Information was sent out to us immediately. The foundation is an immense help to parents, caregivers and medical professionals that are navigating the process of this sometimes difficult and lonely path. I am very grateful for all the workers and other parents I have connected to through the foundation.