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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

89 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!

Volunteer

Rating: 5

The CdLS Foundation is the only US organization that specifically serves the people and the families that experience Cornelia de Lange Syndrome and other similar syndromes without support organizations, When a family first receives "THE DIAGNOSIS," it can be shocking, overwhelming, frightening and lonely. Our first call to the Foundation immediately began with a kind and soothing voice answering and from there, it became a lifeline and an introduction to a community of wonderful staff members, medical experts, and families just like ours. Over the years I've had the honor of attending family conferences, serving on committees and have just completed two terms of service as a Board member. Though my son passed away at age 24, I remain committed to this wonderful Foundation as continue volunteering.

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.

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.

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!