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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.

Client Served

Rating: 5

My daughter Bora was born on January 11, 2014 at John's Hopkins All Children's Hospital in Florida. Right after her birth she was transferred to NICU where she was diagnosed with CdLS. She weighted 4 lb and 3 oz and was 18 inches long. 2 months after, we took her home for the first time and our beautiful journey begun. She went through ups and downs, fought so hard to get better and progress. But, unfortunately she couldn't win her last battle and left us on July 30th, 2018. She was a loving and a very special child with a very special gift. She taught us how to love unconditionally, patience and to see beyond her condition. She was perfect in her own way and she was perfect to us. She will always be loved and will always be missed. We will always remember her as our loving and caring baby as she became our guardian angel in Heaven.

Client Served

Rating: 5

When Aislinn was born 26 years ago, there wasn't a whole lot of information about CDLS. It took the hospital 4 days to diagnose her and the photos and information that they had to share were limited. They photo copied some out dated pictures from an old text book and that was all the information we had about our tiny, sickly little girl. It was devastating. 3 weeks later, a woman from the Albany area, who also had a child with CDLS, reach out to us. I will always remember that day. Since her son's birth the October before Aislinn, Beth had gotten involved with the CDLS foundation and to this day I'm not sure how she got my number, but I am so glad she called. I began to feel connected. We felt we werent alone. Knowledge IS power and with that power, we felt we could endure and eventually learn to enjoy our life with our special child! We attended a couple local gatherings and hosted one before our daughter passed away in 2004. Fast forward 15 years and I still read the Reaching Out publication cover to cover when I find it in my mailbox. It is bitter sweet to see those beautiful faces on each cover.
Although our life since has been busy with "our three sons" I will never forget how this foundation truly helped us!

Madissen H.

General Member of the Public

Rating: 5

I have a sister who has a severe form of CdLS. I am currently working on my Masters degree and I have studied CdLS to the extremes throughout my education. For my bachelors degree, I actually wrote a thesis titled "Cornelia de Lange Syndrome: In the Realm of Caregivers and Surviving." I have reached out to the foundation many times for the newest resources and pamphlets regarding the syndrome and the foundation is quick to assist me in any way they possibly can. This is an amazing foundation and I am thankful for what they have done for me and my education regarding CdLS.

My thesis, with sources from the foundation, is linked here: https://repository.uwyo.edu/honors_theses_17-18/20/

Client Served

Rating: 5


Made new friends I learned a lot about cdls I had help from the doctors I attended dr kline clinic 2 times Iwent to the conferences and volunteered at different cdls events, conferences and golf tourament I spoke at many events

Shirley V.1

Client Served

Rating: 5

We are so grateful to have found the CdLS Foundation all those years ago when Stephanie was first diagnosed with CdLS at age 3, she is now 27 yrs old. Being able to contact the Foundation for help with the medical and developmental concerns we have had for Steph has been truly invaluable as we have come along this CdLS journey. We started in the days before computers and the access to the internet. We were able to pick up the phone and reach out to a person at the foundation office who could always provide us information, comfort, and another parent to contact with a similar situation. Since CdLS is so rare and doctors and other professionals have not heard of this syndrome, having a place to go for the information and then in turn share with them has been so incredibly helpful. The medical advisory board with doctors or therapists for each specialty is just awesome!! It has helped Steph’s doctors, therapist, teachers, and us, to have a better idea of what to expect with her health and development. So for all of these reasons we LOVE the CdLS Foundation!! We want to help in fundraising for the CdLS Foundation and to spread awareness of Cornelia de Lange Syndrome!

Client Served

Rating: 5

Our family has turned to the Cornelia de Lange Syndrome Foundation since 1987 when we have needed support or guidance with our CdLS child. When our son was young we went through many painful years with his aggressive and self injurious behaviors. The Foundation staff are the most caring and dedicated group of women who are always ready to listen or point us in the right direction when we desperately needed help. We have met with Doctors at CdLS medical conferences and so I have seen first hand where support dollars go to help families living and loving someone with this syndrome. We love the CdLS Foundation and will support them for life!

1 Barbara183

Professional with expertise in this field

Rating: 5

I have participated with this foundation on the receiving end and on giving end. I can attest to the support and attention the foundation provides when you have questions, are in need of direction, or just need to voice concerns. Being a part of the team as a volunteer, presenter, and consultant, I am very well aware of the time, energy, professionalism and compassion that is demonstrated by all in the foundation, The foundation is encouraging, provides resources and guidance, and always goes beyond expectation to meet the needs of the CdLS families. The amazing staff is knowledgeable and resourceful. They were always there when I needed them and now it is a blessing for me to return to them in any way possible. I joyfully give them my gratitude and service in return. Perhaps it might not be appropriate in the corporate world to speak in such terms, but I must say that this foundation exudes LOVE!

Previous Stories

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.

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Volunteer

Rating: 5

The CdLS clinical staff are the best out there! Families are forever connected and grateful.

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.