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30 Reviews
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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 .

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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!

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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!

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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!

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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

August 6, 2013

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August 6, 2013

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.

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

more

August 6, 2013

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!

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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

more

August 6, 2013

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

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Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

August 6, 2013

more

August 6, 2013

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.

Ways to make it better...

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

None. To continue to support the needs of the individuals and families with CdLS as they age and new information is discovered.

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

more

August 6, 2013

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.

Ways to make it better...

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

can't think of anything!

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

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Spread the word about CdLS and save a child's life in the process, fundraise to help the Foundation provide assistance to families or provide education to healthcare professionals. Volunteer