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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, 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.

Target demographics: individuals with CdLS and related diagnoses

Direct beneficiaries per year: 5,300 individuals with CdLS and their family members

Geographic areas served: United States

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

Community Stories

85 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

When our daughter was born a year ago doctors told us she wouldn't survive a couple days. She had other plans. She spent 24 days in the NICU and many of the issues found during the pregnancy weren't true. It was during this time our world crumbled again when they gave us the diagnosis of Cornelia de Lange Syndrome. The doctors still were doubting our daughter's fight to survive. My mom made the first call to the foundation for us and within a couple of days we got a package full of hope and answers to many of our questions. They told my mom that when I was ready to talk that they would be there. I have called the foundation dozens of times never once rushed always having a caring ear at the other end of the phone. Without the foundation there is a good chance my daughter wouldn't be here today. With the foundation's recommendations and advice I fought to have testing done when every doctor thought it wasn't necessary. Turns out we were right and she needs to have surgery in the next week to correct the problem. My family is so thankful for the love and support the foundation has given us and other families around the country.

1

General Member of the Public

Rating: 5

My son was diagnosed with Cornelia de Lange Syndrome. When I found out, so many emotions went through my head. Fear hit me like a ton of bricks. After I contacted the foundation..It was the first time from the moment he was born that I was able to take a deep breath and feel some releif. The support, education and direction provided was a huge step towards optimism. After I talked to them my family noticed a difference in myself. So did I. I had a plan and knew what to do to optimize my sons developement. They sent me so much valuable information. Within a few weeks I had learned so much about my sons condition. I call them all the time for advice and reassurance. Their knowledge is admirable considering many health care professionals are unfamiliar with this diagnoses.... Those days or moments when I feel unsure or have concerns for my sons care,my family and friends often tell me to call my "FRIENDS" at the foundation because they always seem to know exactly what it is I need with their understanding and direction. Honestly I couldn't imagine what frame of mind I would be in If it weren't for them. Being the ONLY foundation in the U.S for CdLS..their support and care is priceless.. I am Forever grateful. Im positive hundreds of families feel the same.

2

General Member of the Public

Rating: 5

CDLS is beyond wonderful. From the very first time I called I was welcomed with the most caring, understanding, knowledgeable staff. I hate to even call them staff, everyone has become family. They take the time to answer all my questions, ease any of my concerns. I would be lost without this organization. ~Carol from CT.

Barbara183

Advisor

Rating: 5

This foundation is the touch stone, the well spring, and the sustaining support for me and every family who have a loved one with CdLS.

Previous Stories
2

Professional with expertise in this field

Rating: 5

The CdLS Foundation attempts to reach out and support all families who are affected by this syndrome. They provide sources, networking, and personal attention to ensure that all has been done that can possibly be done with the financial reserves and man power they have to offer. From the tip of the spectrum in investigating scientific etiology to the other end of the spectrum offering personal compassion, concern and care to individuals, they give it 100%. The foundation utilizes every talent and gift they have in their arsenal to support those with CdLS and their families, medical providers, care givers, educational personnel and CdLS awareness . I know. I have been blessed to be the recipient of their services with my beloved CdLS child as well as the being involved in the support process as an educator. I know both sides and have been awed by and tremendously grateful for this foundation.

Volunteer

Rating: 5

I have seen no better organization than the CdLS Foundation that truly cares for the population they serve. With a staff of less than 10, miracles are accomplished for thousands of families each day. Staff members will drop everything to answer your medical questions or even just chat for 20 minutes to distract parents or caregivers from daily challenges.

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.