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35 Reviews
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September 20, 2014

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September 20, 2014

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.
September 19, 2014
1 person found this review helpful

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September 19, 2014
1 person found this review helpful

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!!!!
August 26, 2014

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August 26, 2014

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!
August 9, 2014

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August 9, 2014

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Have a satellite office closer to where I live. I know, I know, that sounds selfish of me doesn't it?

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

August 9, 2014

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August 9, 2014

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.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

August 7, 2013

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August 7, 2013

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 .

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

August 6, 2013

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August 6, 2013

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

August 6, 2013

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August 6, 2013

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

August 6, 2013

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August 6, 2013

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

August 6, 2013

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August 6, 2013

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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