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2018 Top-Rated Nonprofit

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

Client Served

Rating: 5

The foundation is completely transparent with their finances. The staff goes above and beyond to assist families. The foundation works closely with the leading doctors and researchers involved regarding the syndrome. They help connect families with other families since the syndrome is very uncommon.

The staff at the foundation are lifesavers and a valuable resource for families and professionals.

2 Sandra71

Client Served

Rating: 5

The Foundation has been a wonderful source of information, support, and encouragement. They have put me in touch with experts who understood what we were going through. The 'ask the expert' section of their website has been very helpful.

Previous Stories
2

Client Served

Rating: 5

The CdLS Foundation has helped our family in so many ways. They are always available to answer questions and help our doctors, who are mostly unaware of specific CdLS challenges, find answers. We would be lost without the CdLS Foundation!

2

Board Member

Rating: 5

I've known about the CdLS Foundation since my brother passed away many years ago from complications due to CdLS. I've had the privilege in recent years to serve the Foundation as a Board Member and part of the Research Committee and I am consistently amazed at the ability of the Foundation staff to drop everything to address the needs of those families affected by CdLS. I've consistently seen staff who know the face, name and needs of each family member affected by CdLS. In recent years the Foundation has continued to amaze me by their desire to strive to ensure each person affected by CdLS receives the highest level of care possible. Keep up the wonderful work!

2

Board Member

Rating: 5

I have been working with the foundation since my son was diagnosed 10 years ago. For the past 3 years I have been a board member and love every minute of working with my fellow colleagues and the foundation. They always go above and beyond to help families! Keep up the good work!

2 Stacey41

Professional with expertise in this field

Rating: 5

I have had the privilege of working with the foundation for a number of years and they never fail to go above and beyond in the service of patients with CdLS and their families. The convention is a fantastic educational opportunity as well as a venue to interact with other families and providers who have expertise in CdLS. I highly recommend it.

1 Wanda9

Client Served

Rating: 5

Hey, anyone who's reading this, if you've never had a loved one with a rare medical condition, I don't know if you can fully appreciate just how important the Cornelia de Lange Foundation is to the people they serve, but I'll try to convey as much as I can. CdLS is very rare, so rare that very few doctors, seemingly, have even HEARD of it, and misdiagnoses are way too frequent. Failure to thrive, our granddaughter was labeled, in a massive medical shrug. WORD NEEDS TO GET OUT about these rare disorders, so people don't have to struggle to deal with the unknown. Once we found a doctor who had a clue, and got a diagnosis, and we knew what to research, we found the Foundation, and their help cannot be overstated. They operate as clearinghouse for crucial info, organizers of support gatherings, encourage the research of specialists in the field, and coordinate outreach groups so some of the estimated 20,000 as yet undiagnosed CdLS folks can be helped, too. We know where to turn! CdLS Foundation!!!!

Jennifer383

General Member of the Public

Rating: 5

When a family - because the family deals with it, not just the child - has a diagnosis of CdLS many have never heard of it before and have no idea where to turn. It is a big, scary medical world for special needs parents and it is frequently overwhelming. Thankfully, The CdLS is there to help navigate the insanity and provide answers. Not just answers, but personal answers for where ever a family may be located. I have never had an issue with anyone being too tired to help me, or even not knowing an answer. This foundation is a lifesaver for those who frequently find themselves adrift in the sea of confusion when battling a new diagnosis. Without them, I can't even imagine where I would be!

1 Brandi11

Client Served

Rating: 5

The Cornelia de Lange Syndrome (CdLS) Foundation is an amazing foundation full of people who truly care and are making a difference everyday! My family was connected to the CdLS Foundation upon the birth of our first child, who was diagnosed with CdLS. One of the largest obstacles we encounter is CdLS is rare, it is hard to find doctors who are familiar with the syndrome and it is even harder to find other families like us. The CdLS Foundation has helped us to educate our local doctors, connected us to doctors who specialize in CdLS, they support research opportunities and continue to keep us aware of current research, they are always there to offer support and through the CdLS Foundation we have found other families of CdLS like us. The CdLS Foundation offers light during the dark and scary times, and continues to offer hope, understanding and opportunities for the future. The Cornelia de Lange Syndrome Foundation is making a difference in so many ways!!!!

Caroline27

Client Served

Rating: 5

My grandson has CdLS and as a result, the Foundation is critical to him and the family for information on the syndrome. It has provided us with education, referrals, and support every step of the way since his diagnosis when he was 5 months old. He is 6 years old now. His mother just returned from the national conference in California and was completely blown away by that experience. My son is hopeful that he will go next year with his son. I have learned so much from the wonderful people of the foundation, they are Always there for me.

Client Served

Rating: 5

The CdLS Foundation has been great resource as have the medical professionals who advise the foundation. The conference I attended provided a wealth of information and understanding of the disorder. A life raft when one is at sea.

Linda201

Client Served

Rating: 5

We have been part of the CdLS Foundation from it's earliest days. With a tiny newborn in 1977 and no information, we groped our way through each day. When the CdLS Foundation began in 1981 by a group of parents scattered across the country-hope, support, information and advocacy began for us. Today the Foundation is an extraordinary organization of families, professionals and friends, now numbering in the thousands. The information and support that can now guide families is awe inspiring! What an accomplishment ! Our Adam died in 2001 but the CdLS Foundation is still there or us .

Client Served

Rating: 5

My son was diagnosed with CDLS at birth. The foundation provided me with much needed information and answers to questions that I could not seem to get elsewhere. They helped me connect with other families and to the CDLS clinic in Philadelphia (we live in Florida). Without them I feel I would still be lost having a son with a syndrome I had never heard of before. With their help I feel my son is on the right path and I have gained a great amount of knowledge on things I can expect and be watchful of for his future. Thank you CDLS foundation!

Client Served

Rating: 5

Our son was diagnosed with CdLS at birth, and within days the foundation had provided us with information and support. He's now nearly two years old, and the foundation has continued to offer information, connections, and assistance with great responsiveness and a real sense of caring. We were able to attend the CdLS conference last year, and it made such a difference for us and our daughters. This is the best nonprofit organization I have ever been a part of ... and I work at a nonprofit!

Cece2

Client Served

Rating: 5

Our son, Joel, was diagnosed shortly after birth in March of 1999. It was very hard and very confusing at first. The doctors in our town really didn't know much about the syndrome and had it not been for the pediatrician on call the night our son was born the diagnosis would not have been made so quickly. He had seen one other case of Cornelia De Lange Syndrome in his entire career. While Joel and I were in the hospital my husband contacted the foundation for some information and help. By the time we got home we had lots of information to read! The foundation was such a help to us and so willing to offer advice and concern and so willing to answer any of our questions that I honestly don't know how it would have been with out all their help. A special thank you to Dr Laird Jackson who was so sincere and compassionate that I will forever be grateful for his help. Thank you to everyone at the foundation, you have no idea what a help you are to CDLS families!

Juli F.

Client Served

Rating: 5

My daughter was diagnosed with CdLS 16 years ago. The foundation was an amazing help to us during that time and since then to be honest. For a time, after she was first diagnosed, I was the Awareness Coordinator for WA. Between that and just being a parent I was able to get so much information and help in dealing with her, her doctors, the early intervention programs and more. They hooked me up with other parents in the area and I was became a part of a email group that was a huge help with issues and problems specifically related to the syndrome. I live in a small town and we don't have any kids with this here as well as when you tell people they are really surprised. Now that she is 17 and a teen with all of the puberty issues, again having the website as a continuing resource for information on behavioral meds and specialists, child psychiatrists and what to ask them as well as personal experiences from other parents who have gone through this has been invaluable during the times of extremely high stress with her. Thank you for being here all of these years and the promise to continue to be here for us!

Client Served

Rating: 5

Since the day my son was diagnosed with CdLS, the foundation has been unbelievable. I was immediately connected with local families, they helped ease my fears of what doctors were saying about my son, and within days had a huge welcome packet delivered to my house. The services they provide families free of charge is beyond expectations. Any time the doctors are stumped, they get in touch with CdLS experts and always help answer our questions. The conferences & gatherings they hold to meet with experts & other families is amazing and so helpful being able to connect with other families of this rare syndrome. With their help, it is much easier to realize the blessing these children are in our lives instead of spending all of our time trying to figure out everything on our own. Our lives would truly not be the same without the amazing CdLS Foundation.

Client Served

Rating: 5

When my son was diagnosed with Cornelia de Lange Syndrome last year, the first place we were sent was the CdLS foundation. We found it to be so helpful, informative, supportive and everyone there is SO kind!

Frank L.

Donor

Rating: 5

Friends of ours has a daughter with cdls. This foundation has been a great support and resource for them. They are amazing!!

Lynnette M.

Client Served

Rating: 5

23 years ago my life was turned upside down when my firstborn child was diagnosed with Cornelia de Lange Syndrome. I was shown an outdated photo and given inaccurate information about his life expectancy and condition. Without a computer, or internet in those days, my only source of information would come from a phone number given to me by the genetics counselor who thought "it might help". That number was to the CdLS Foundation. My son was just days old, but that number gave me access to a lifeline of hope. That day, my lifeline came in the form of a sympathetic ear, accurate information, and written materials. Over the years it has included consults with medical staff, support from professional staff, attendance at family gatherings and conferences, and a wealth of information and discoveries. I have met so many wonderful families who share this journey. The Foundation's dedicated staff have enabled the organization to grow in leaps and bounds and continues its mission to support families in every way possible.

Karen184

Client Served

Rating: 5

I am so grateful for the information and support that the CdLS Foundation has given us over the last five years, that I am running my first marathon (in NYC!) to help raise money for them as a member of Team CdLS! This is an organization that really helps families--it's not just about the individual with CdLS, but about everyone that is part of their life.

Client Served

Rating: 5

My son was diagnosed with CdLS in 2008 at age two. The foundation has been incredible in providing all kinds of information resources to help us understand his future prospects better. We've also attended a Foundation-sponsored family gathering event, and have organized one ourselves for affected families in our home state, with support from the CdLS Foundation.

Client Served

Rating: 5

My son was recently diagnosed with Cornelia de Lange Syndrome. One of my first calls was to the CdLS Foundation. Within hours they sent information about CdLS, put a packet of follow-up information in the mail (which we received 2 days later), connected us with another CdLS family living in CO and talked us through how to jump into this new world we were suddenly a part of. While the diagnosis was tough to hear, we wanted to quickly learn as much as possible to get our son the services and support he needs to live his best life. The CdLS Foundation gave us a jump start and also invited us into the family with open arms. We've been grateful for their help!

Our son is an amazing little guy and is making HUGE progress with his new therapies. And we are looking forward to going to the West Region Family Gathering this September to meet other CdLS families. Thank you CdLS Foundation!!

Client Served

Rating: 5

I have a daughter that was born with Cornelia deLange and when I found this foundation I knew I was not alone. It is a wealth of information in order to help us and get us in touch with other families who also have a child with CdLS.

Client Served

Rating: 5

The CdLS foundation has been an awesome source for information. They have helped everyone from our geneticist to family members with information.

Client Served

Rating: 5

The CdLS Foundation is great. They have always been there when my wife and I needed it. We love our Reaching Out publication that has the latest information and news about CdLS. They do all of this free of charge for families...just incredible. We have, on numerous occasions, contacted the CdLS Foundation for help with medical issues for our daughter. Their knowledge and the knowledge of the specialists on the advisory board has been so valuable and improved the quality of life for our daughter.

Robin72

General Member of the Public

Rating: 4

this is been one of the most helpful tools with my daughter to the years. I have appreciated the ease and use of the Site and the way it has developed through the years becoming better and better.

1 Dawn40

General Member of the Public

Rating: 5

Our grandson was diagnosed with CdLS at birth. Unlike other conditions, CdLS has only one source of accurate information and support in the entire country. It was the first call we made. There wasn't a voicemail to leave a name and number, it was a person.. Answering the phone.. After one phone call, our world stopped spinning out of control. We had hope, understanding, support and a true feeling that we were not alone. The entire staff remembers your family. They invest their heart not just their time. They support the entire family, not just my grandson. No matter what we are facing, we know whenever we need advice, they are there for us. They truly foster an environment of community and family. The CdLS Foundation walks our journey with us, every step of the way. We would be far less educated and alone, but because of the dedicated staff at the CdLS Foundation, we are armed with all the latest information, and someone to guide us.. When we are unsure of our next steps.

1 Beth68

Board Member

Rating: 5

The Cornelia de Lange Syndrome Foundation has been an important part of our lives since our son was diagnosed at birth with CdLS 21 years ago. They have been our only source for accurate and current information about all aspects of the syndrome. They have provided us a sense of family in what can feel like a very isolating life. They have been our lifeline through the darkest days and helped us through so many challenging times. They are professional but warm and caring. They continue to actively research all aspects of the syndrome so that families can make informed decisions for their loved ones.

Client Served

Rating: 5

When it was suspected that our daughter, now 4-years old, had CdLS, we found comfort in knowing the Foundation was a resource for us. This past summer we attended our first CdLS conference hosted by the Foundation. Whatever hesitancy we felt melted away within the first few moments of stepping inside the door. Whether it was meeting other CdLS families, speaking with physicians or therapists, or simply watching our daughter interact with her new friends, we could not have felt more embraced or at home. The staff and professionals associated with the CdLS Foundation are an amazing and inspiring group truly dedicated to championing for families.

Molson

General Member of the Public

Rating: 5

LOVE the Cornelia De Lange Syndrome Foundation! They have helped me learn and understand more about my daughters syndrome! Also a great place to connect with other families!

1 Kevin46

Donor

Rating: 5

The dedication and hard work of CDLS Foundation's staff is inspiring. To witness first hand, the love and support that this team shows to each of these families is motivation enough to give to this great cause. I've witnessed first hand how a foundation member works around the clock and throughout weekends and vacations to ensure that they are personally doing their best to help all those affected. There is no greater way to explain how much they care.

Denise40

Volunteer

Rating: 5

Thank you so very much for all that you have done to help me get the word out about CdLS. I have never heard of it until my niece Haven Ray was born with it 5 years ago. And now I'm trying to get as many people aware of it as I can. I also do lots of fundraisers to raise money for the foundation, every little bit helps. Im so glad that the foundation was here to help my niece and her family during all of her surgeries and everything she has gone through. They really provide the families with so much information. Thanks again. Denise Ray*

2 Cindy65

Client Served

Rating: 5

My son, David, was going through a very rough time several years ago. I talked at length with the folks from the foundation. They hooked us up with a national expert who then spoke directly with David's local doctor. The foundation is a central place of up to date information, support, and connections. More recently when my son went into the ER, the resident physician stated that he didn't know that much about CdLS and he wanted to look it up before he decided on any more treatment. Because of the foundation he came back to say that even though it looked like a behavioral episode, a complete medical work up was indicated because behaviors are the result of underlying medical conditions. David had a medical problem which required surgery that night. The foundation is very responsive to people's concerns, and questions.

Andrea P.

General Member of the Public

Rating: 5

My son was diagnosed with Cornelia de Lange Syndrome shortly after his birth. Since that time, the Foundation has been a wealth of knowledge for my family and his healthcare providers. The Foundation not only provides the families of those living with CdLS a trust worthy resource of medical information it also provides love and support for the family and individual. At no charge to families, friends, doctors and supporters, the Foundation sends out newsletters. They also coordinate family gatherings. This Foundation truly exists to support CdLS.

Stacy L.

Client Served

Rating: 5

Great place to find info and an excellent place to direct doctors to when they are unsure how to proceed with my sons condition!