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2018 Top-Rated Nonprofit

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

117 Stories from Volunteers, Donors & Supporters

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.

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

Ever since I have become apart of the foundation, I have been blown away. There are always people available to help with medical questions, treatment suggestions, and are will to collaborate with other doctors to educate them on conditions of our children. Anytime that I have needed to contact them, I always receive a response in a timely manner; typically right away. I could not have asked for a better foundation. They bring all of the families together to create one big family. It's just so great!

Client Served

Rating: 5

The CdLS Foundation was there for us in our darkest hours. We received the diagnosis of Cornelia de Lange Syndrome shortly after my second son was born. He was hospitalized for 4 months before he was able to come home. We reached out to the foundation once we got the diagnosis and was immediately welcomed. We received a wealth of information that we were able to pass along to my son's physicians. We were also put in contact with doctors though the foundation that were able to help guide his treatment while hospitalized. They are always available to answer questions that come up as our son gets older and faces new challenges. Without their care and support, we would not be able to say our family is thriving.

Client Served

Rating: 5

The CdLS foundation provides wonderful support. It was a Godsend when our daughter was born, and remains a tremendously positive force in our lives.

1 Lorrie K.

Client Served

Rating: 5

Our Son was diagnosed with CdLS when he was three years old. That was 26 years ago. At that time there the research was in it's infancy. There was no identified gene and no known testing or screening. We utilized the CdLS foundation as a resource to manage symptoms and to provide some support in knowing that we were not alone. Today the information that is provided to new CdLS families is amazing and the research is truly cutting edge. This past year I have found a way to give back by being a parent resource in my Tri State area.

Kathleen120

Volunteer

Rating: 5

Have been apart of this organization before it even became an organization. .it started with chain letters between parents with CDLS children. It was started by 2 mothers who cared and wanted to REACH OUT to other parents and find children with this rare syndrome. It has helped thousands of families since that time.

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

Board Member

Rating: 5

I have been involved with the Foundation since the birth of my son in 2000. They have been there for our family as a sounding board and resource and are phenomenal at bringing affected families together. They are strong advocates and visionaries. They form and support a community. They are professionally run with sound financial practices.

Courtney70

Client Served

Rating: 5

The Cornelia de Lange Syndrome Foundation is truly a blessing for families with CdLS children. From the start they have been there for our family. Their support of families is unbelievable. They go above and beyond in answering any questions we have, they give us suggestions, they are open to talk to any of Cassidy's teachers, doctors, therapists. They even offer the emotional support parents need and are just there to listen when needed. The CdLS conference was a game changer for us. Their Experts put us on the right path and because of their suggestions we have discovered more about our child's needs and health issues. They have helped us in getting our proclamation for the state to raise awareness for CdLS. They have supported family gatherings to bring parents and kids together. There are not enough words to express our gratitude to the foundation. I have no clue what my family would have done without them.

Nick70

Client Served

Rating: 5

The CdLS foundation has been very supportive of our family. They have knowledgeable and helpful staff and have numerous specialists on call. The website is a treasure trove of information. They put together gatherings and a fantastic newsletter. Very well organized. We're so thankful to have such a great organization to help us!

Tiffany70

Client Served

Rating: 5

When our son was diagnosed at 13 months old, we had no idea what to expect. We had never heard of CdLS before, and we had so many questions and fears. My husband contacted the foundation via email, and they actually called him right back. They were so thoughtful, so comforting, and such a beacon for us in a dark, scary time. I will be forever grateful for their kindness and their knowledge, and for all they do to support families like mine across the country, and the world. Fabulous group of professionals here. The world is better because of people like them. THANK YOU!!

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.

Susan490

Client Served

Rating: 5

We have a 27 year old son with CdLS. Through all these years the CdLS foundation has been a tremendous support to us! They have guided us through some tough situations providing us access to expert doctors and others who have experience and knowledge of this rare syndrome. These experts are also available to everyone at the national conferences they host. A wonderful way for families to get together for mutual support. A first class foundation!

Renee80

Client Served

Rating: 5

The CdLS has been a lifeline for my family for 22 years. Several days after my daughter was born with this rare syndrome, she was on life support and not expected to live. I was desperate for information. With tears streaming down my face, I called the Foundation. The executive director was the compassionate, caring voice that I needed to hear. They sent information to me overnight, and have continued to provide this same level of loving care to my family throughout my daughter's life. This is such a rare syndrome that many medical professionals have never treated a child with it. The Foundation has helped us navigate many health issues and provided a network of friends we can call on for advice and support. I don't know where we'd be today without them!

Professional with expertise in this field

Rating: 5

An amazing operation that helps provide services and awareness to families affected by Cornelia de Lange syndrome (CdLS) a rare genetic disorder that affects growth learning and almost every system in the body. This small organization provides services to over 2000 affected families, organizes conferences, raises money for research and is a great resource to families, professionals and other organizations. The CdLS Foundation should be the model of how rare disease foundations should be run!!!

Linda433

General Member of the Public

Rating: 5

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

Client Served

Rating: 5

We could not have survived the last 30 years without the friendship, support, advice so generously and compassionately offered from the staff at the CdLS foundation. Even with Director and employee changes through the years the CdLS foundation employees are dedicated, caring and top notch! I'd give them 10 stars!

Jennifer482

Client Served

Rating: 5

Wonderful and helpful My so has Cdls and has guided me greatly along the way over 14 years

1

Volunteer

Rating: 5

When I call the Foundation, I couldn't believe the kindness and sensitivity AND help that the staff at the Foundation provided. I know that experience continues to be true today for new families. The Foundation is a font of knowledge about this syndrome...accurate and up-to-date information so helpful and needed by caregivers and professionals. The Foundation builds important relationships with the medical and professional communities to advance understanding of the syndrome to ensure appropriate treatments are provided. And the Foundation and families support important research by professionals to further even greater understanding of CdLS. I don't know what we and others would do without this important organization.

Previous Stories
1

Board Member

Rating: 5

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.

Client Served

Rating: 5

The CdLS Foundation has been a very helpful resource sine my daughters diagnosis. They have connected me with other parents, provided me with reputable information and have also been a great resource when discussing a treatment plan with our pediatrician.

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!

1

Client Served

Rating: 5

The CdLS foundation was a wealth of information when our twins were diagnosed, and have provided so much guidance over the years. I can't imagine being on this crazy frightening journey without their support.

1

Client Served

Rating: 4

The foundation has given us information on our little love support and guidance. Thank you

1

Client Served

Rating: 5

The foundation is near and dear to us. They helped us even before our daughter diagnosed. They are now family. They are always there to listen and help no matter when.