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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

117 Stories from Volunteers, Donors & Supporters

1 Shay E.1

Client Served

Rating: 5

The day our daughter was born, we realized something was different. The first week of her life we were overwhelmed and unsure of our next steps, and that is where the CdLS Foundation came in - they saved us in more ways than one!!
They gave us hope, joy, unlimited amounts of resources and information, and a place to call home and feel welcome without having ever met in person. Every time I email or call, I am met with kindness and understanding.
If it wasn't for the foundation, we would probably still be lost!!

If your child or loved one, or someone you know, has CdLS then this is a great resource for you!

Client Served

Rating: 5

It seems like yesterday that we received the diagnosis of Cornelia de Lange Syndrome (CdLS) for our daughter, Iselen, who turned 27 years old this year. She received a confirmation of a diagnosis of CdLS when she was 3½ when we attended our first Cornelia De Lange Family Conference in 1996.

The geneticist who gave Iselen her provisional diagnosis of CdLS provided contact information for the CdLS Foundation. I called the Foundation the next day and will never forget when the Family Service Coordinator answered the phone. I was tearful and worried that our daughter had a complex and rare disorder. The welcome in her voice and the reassurance I heard over the phone, opened the door for us to look at a future that no longer seemed bleak and frightening. I knew there was an organization that would bring support and information for our family and help us look ahead to the future.

Iselen has faced medical, developmental and behavioral challenges throughout her life. Through the CdLS Foundation, we have gained important knowledge about CdLS, learned about how CdLS effects our daughter, and have received critical information about the unique medical, developmental and behavioral issues our daughter has faced and may face in the future. It has been important for us to have a good source of information to help us navigate the many systems on behalf of our daughter to assure her health and welfare.

We have been able to share information about CdLS that we received from the Foundation with professionals including medical providers, teachers, physical and occupational therapists, and service providers. The CdLS Foundation has provided information that is based on current science, pertinent to what we have needed, and readily available when we asked for it.

The CdLS Foundation exists and functions for the welfare of individuals with CdLS and their loved ones. I served as a member of the Board of Directors and observed the commitment of the Executive Director, the staff of the Foundation, and the many other individuals who volunteer their time and effort to help the Foundation meet its aim of "Reaching Out, Providing Help, and Giving Hope".

Thank you for your time and attention.

Kari Cunningham-Rosvik MN ARNP







Board Member

Rating: 5

I have been involved with the CdLS Foundation as a professional, and as a CdLS sibling. I am continually amazed by the authentic and high quality work and support this Foundation provides. Their commitment is first and foremost to CdLS families, and this commitment never waivers. The Foundation staff are truly dedicated, and continually provide services that are relevant to the evolving needs of CdLS families, while supporting ongoing CdLS research. The CdLS Foundation is recognized globally, and frequently serves as the model of CdLS support and outreach. Being a part of the CdLS Foundation has been a true privilege for me.

Previous Stories

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.

ceangel

Client Served

Rating: 5

My daughter Maura was born prematurely in 2001 weighing 3lbs 4oz. She has a small head and missing finger. A geneticist was called in the next day and told me about Cornelia DeLange Syndrome. Your head is full of grief worry and confusion. A member of my family found the CdLs Foundation on line. The information was very helpful We were able to be connected to other parents and soon our hopelessness was turned around. Even though the drs and nurses were not overly optimistic seeing stories about other children was so helpful. The staff at the office are friendly compassionate and willing to help. Being able to talk with Doctors and therapist through out our walk with this condition is wonderful.

Previous Stories

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

Our daughter, Rebekah, was born 20 years ago this month, and we were fortunate enough to get a diagnosis the day after she was born. Through research that one of our friends had done we found the CdLS foundation. We called before we left the hospital and were immediately enveloped with love, information and support! We have served as Awareness Coordinators and attended many small and large group events. It is absolutely amazing what this foundation is able to provide for these families. Every aspect of this journey with a special needs child is covered. No matter what your question is (medical, legal, educational, etc.) the foundation can point you in a direction that helps you find an answer, but most importantly, any time you interact with anyone the genuine love and concern that they have is evident in all that they do!! What a blessing this foundation has been for so long to so many!! The Keenans

1 Regina D.1

Client Served

Rating: 5

Thank you for helping my mom understand what was going on with me. The Cornelia de Lange Syndrome Foundation is a voice when you aren't able to verbalize or communicate very well. Bravo for a fine job done! Keep up the good work. - Even though I am in Heaven now, my mom needs the CdLS Angels page to remember happy times we had together on Earth. Thanks again, Jessica Doherty

1

Client Served

Rating: 5

Wonderful family support and a very informative website.

1

Client Served

Rating: 5

Always there to try to help families affected by the syndrome- great charity

1

Client Served

Rating: 5

I called the CdLS foundation to ask a question and Whitney was so helpful and kind, and informed me of all the services they offer and made me feel very welcome. She went beyond my question and I'm so grateful this foundation exists to support our family!

1

Client Served

Rating: 5

Gregg was diagnosed with the Cornelia de Lange Syndrome in 1965 at the age of 6 months in Seattle by Dr. David Smith, the first doctor to publish on this syndrome in the U.S. Little was known about CdLS at that time. No services were available for Gregg and there was no CdLS Foundation to offer us support. How we wish there was! We felt so isolated. It wasn't until the early 80's we learned of the Foundation through the Exceptional Parent magazine. From that time on we have benefited from the great support of the CdLS Foundation. We have attended 12 national conferences and one international conference. Through these conferences we have learned so much and enjoyed the friendship of CdLS families, the Foundation Staff, the Scientific Advisory Council, and Educators. I had the privilege of serving on the Board of Directors for 3 years which deepen my appreciation of the Foundation and the support it offers families. We only wish we could have had that support the first sixteen years of Gregg's life. He is now 53 years old and still loves to go to the national conferences.


Evelyn P.2

Client Served

Rating: 5

CdLS Foundation is ,ore than a support system for our CdLS children. The foundation helps the families in multiple ways and respond quickly to our needs and concerns. The foundation goes above and beyond for us because if they do not have the answers to our questions they will not stop till they find the appropriate answer.

Client Served

Rating: 5

The staff are awesome and go out of the way to assist you when you call. They also offer all kinds of medical information about this syndrome which can vary in each individual who has the syndrome.

Previous Stories

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.

Board Member

Rating: 5

I have been involved with the CDLS Foundation for over 30 years in multiple capacities. We just had our 30th annual golf tournament and my wife and I received a presentation of appreciation which we were humbled to receive. I would like to present the following as our gratitude to all the families that we have had the opportunity to serve.
Presented to Jim and Joyce Kesting, October 8th, 2018
In appreciation for the devotion and commitment of 30 years spent helping families with CDLS in honor of our daughter Amber. Your kind heart and dedication over the years has touched our life and so many others in such a positive and meaningful way. You have left a lasting mark that will be with us always and forever. God Bless You! With much love and a heartfelt thank you. Doug, Barb & Amber

General Member of the Public

Rating: 5

I ran the 2004 Chicago Marathon with Team CdLS to help raise awareness. The CdLS people (families and staff) I met race weekend are some of the most caring, giving and passionate people I know. I'm honored to continue friendships with them and support them as best I can.

Patrinky

Donor

Rating: 5

When my nephew, Jack, was diagnosed with CdLS 19 years ago, we had never heard of it. Although CdLS USA was relatively new and much smaller back then, it helped our family in a big way by opening up a network of resources and access to other families. Knowing we were not alone on this unfamiliar journey helped immensely. As a result, and due in a huge part to his mom and dad’s superb parenting, Jack has thrived and grown into an active and content young man. Kudos to CdLS USA!

Donor

Rating: 5

The CdLS has been an ongoing source of support and useful information since my son’s diagnosis. I was initially surprised by the thorough, and quality publications they immediately mailed me. The website is a resource I turn to often for different issues as they arise. I have called the foundation on many occasions to ask for guidance. They have contacted an expert that has made suggestions for how to proceed with our local medical team, and shared helpful ideas for the unique challenges we face. I am thoroughly impressed with how well run the foundation is. We contribute as we can, as I know they dollars are well spent. They somehow manage to run it lean, and still provide outstanding printed, digital, and Human Resources to this population and their families.

General Member of the Public

Rating: 5

I had a difficult pregnancy with my daughter, Lily. There were always concerns and doubts about whether she would make it or not. After what seemed like an eternity later, my little peanut was born and stayed in the NICU. After wondering what could be causing so many complications during the pregnancy, her little eyebrows gave her away; she had CdLS. The diagnosis was not an easy one to come to terms with. Doctors and geneticists were not able to give me answers as CdLS is so rare. However, they referred me to the foundation and it was a lifesaver. I called them and left a message and the nicest woman called me back, answering as many questions as she could. Not only was I able to get more clear answers about my daughter's future, but they also had such a positive outlook on everything. After hearing so many doubtful opinions for the better part of a year, it was refreshing to have someone with experience, ease my own doubts of what was to come. Receiving their quarterly newsletters also means the world to me. It reminds me that we're not alone. I owe so much of my sanity to this foundation.

James202

Client Served

Rating: 5

When Jimmy Crawford was born in Sept. 1984 we were totally removed from reality with his diagnosis of CdLS. Lost is the closest I can come to explain where we were. The wonderful people from California Dept. of Human Services gave us the number to CdLS Foundation, we contacted them and they went into overdrive! Without them we would be lost to this day! Jimmy passed away in April 2017 and the sympathy and caring response has helped us to cope with this tragedy. We will forever be in debt to the wonderful people of CdLS foundation. With love and respect, Jim & Marlene Crawford ( in memory of L'il Jimmy!

Previous Stories
1

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!

General Member of the Public

Rating: 4

The world met Hunter shortly after he met the world. Blond and handsome he was - and is. Largely unnoticed were his somatic CDLS phenotypes, due largely to a mutation in the NIPBL gene residing within Chromosome 5. These were corrected by surgeons. But Hunter's speech and coordination are compromised, requiring a lifetime of therapy and adjustments.
He remains a beautiful young man. His future depends upon the empathy and competence of social workers, well-intended, but a hit or miss proposition, and on this: the largess of citizens who can fund genetic research, science! We, and I and his caring family, await the day when the CDLS Foundation periodical is choked with reports of research findings, and new techniques for managing daily living can be found on the back-cover. Thankfully, the Foundation concentrates all efforts large and small. But It is time to turn up the Bunsen burner - CDLS needs millions, far more desperately than your college or library or local club, all of which woo us with manifest prizes and publicity, elevating our resume's and obituaries.

Client Served

Rating: 5

Without CDLS Foundation we wouldn’t be where we are today with out 19 year old. I would have never imagined you could call a foundation and get medical advice or encouragement or just the map that points you in the right direction. Most importantly the foundation continues to research all the ways you can continue medical testing to help prolong your child life. life without a foundation we’d be lost.