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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

55 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

My son Luca was born on September 1, 2014 and was diagnosed with CdLS. We contacted the foundation a few months after his diagnosis and we had nothing but amazing support from the staff. It has been 3 years and we've have nothing but continued support from everyone there from connecting us to other families to getting us in contact with the right people to find the answers we were looking for!

Client Served

Rating: 5

The CdLS Foundation has been an invaluable resource to my family as well as the hundreds of other families who have been impacted by the diagnosis of CdLS. For many people, including myself, the diagnosis left us heartbroken and feeling lost. The Foundation was there to guide us and help us navigate the confusing world of dealing with doctors, insurances, the red tape of early intervention, etc. The team at the Foundation is a group of people who are compassionate, are generous with their time, extremely supportive and do so much to raise awareness and help families cope with the unexpected that comes with having a child/family member with CdLS. In addition to raising awareness and educating people about CdLS, the Foundation is always doing things to bring families together. Between fund raising events, family gatherings and social media, there are so many ways the Foundation works to be there for their extended CdLS families. We couldn't imagine life without the Foundation and will be eternally grateful for the love and support they have shown us.

Client Served

Rating: 5

The CdLS Foundation has been a lifeline for our family. From the week my daughter was born, they have offered compassionate support. They have been there for us during the darkest days of our lives. They have also provided vital information that helped us save her life last October when she developed a life-threatening condition called volvulus. Doctors would not have been quick to check for this condition, since other more common conditions cause the same symptoms. But after learning that people with CdLS may develop volvulus more frequently than the general population, we insisted that doctors rule that out first. That decision saved her life, After emergency surgery and 3 weeks in the ICU, Kayla came home to us!

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!

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.

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.

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

As soon as my grandson was born without forearms and only a thumb on each arm, he was diagnosed with CDLS. I found the Foundation online and contacted them. I was immediately given support and information about this syndrome. The person I spoke with assured me we were not alone and immediately sent out packets of information that showed resources available and information on what could possibly be the progress of my grandson. This foundation has continued to be a stalwart of support. We even won a scholarship to attend their national convention which provided a wealth of additional medical, social, and lifestyle information and support. Kudos to the CdLS Foundation! This photo is from the foundation's quarterly magazine that featured my grandson in Nov 2015.

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 James202

Client Served

Rating: 5

jimmy (cdls child) was born 091884 and as everyone whos has been blessed with one of these children can attest it is quite a shock! the foundation was fairly new at the time of jimmy's birth but they soon became a focal point for resources in help us with jimmy's care. we love this foundation with all our hearts! God bless you all! incidentally if anyone reading this shops @ amazon know that they will contribute a percentage of the sale to the foundation if you shop "smile.amazon.com". just register the foundation as your charity of choice!! sincerely, Jim and Marlene Crawford. Jimmy too!

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.

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!!

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!