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Cornelia de Lange Syndrome Foundation, Inc.

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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

17 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.

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!

Robin72

General Member of the Public

Rating: 4

this is been one of the most helpful tools with my daughter to the years. I have appreciated the ease and use of the Site and the way it has developed through the years becoming better and better.

1 Dawn40

General Member of the Public

Rating: 5

Our grandson was diagnosed with CdLS at birth. Unlike other conditions, CdLS has only one source of accurate information and support in the entire country. It was the first call we made. There wasn't a voicemail to leave a name and number, it was a person.. Answering the phone.. After one phone call, our world stopped spinning out of control. We had hope, understanding, support and a true feeling that we were not alone. The entire staff remembers your family. They invest their heart not just their time. They support the entire family, not just my grandson. No matter what we are facing, we know whenever we need advice, they are there for us. They truly foster an environment of community and family. The CdLS Foundation walks our journey with us, every step of the way. We would be far less educated and alone, but because of the dedicated staff at the CdLS Foundation, we are armed with all the latest information, and someone to guide us.. When we are unsure of our next steps.

Molson

General Member of the Public

Rating: 5

LOVE the Cornelia De Lange Syndrome Foundation! They have helped me learn and understand more about my daughters syndrome! Also a great place to connect with other families!

Andrea P.

General Member of the Public

Rating: 5

My son was diagnosed with Cornelia de Lange Syndrome shortly after his birth. Since that time, the Foundation has been a wealth of knowledge for my family and his healthcare providers. The Foundation not only provides the families of those living with CdLS a trust worthy resource of medical information it also provides love and support for the family and individual. At no charge to families, friends, doctors and supporters, the Foundation sends out newsletters. They also coordinate family gatherings. This Foundation truly exists to support CdLS.