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!
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.
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.
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.
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.
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
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.
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!
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.
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.
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!
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!
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.
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.
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.
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!
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/
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
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!
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!