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.
I have seen no better organization than the CdLS Foundation that truly cares for the population they serve. With a staff of less than 10, miracles are accomplished for thousands of families each day. Staff members will drop everything to answer your medical questions or even just chat for 20 minutes to distract parents or caregivers from daily challenges.
Have been apart of this organization before it even became an organization. .it started with chain letters between parents with CDLS children. It was started by 2 mothers who cared and wanted to REACH OUT to other parents and find children with this rare syndrome. It has helped thousands of families since that time.
When I call the Foundation, I couldn't believe the kindness and sensitivity AND help that the staff at the Foundation provided. I know that experience continues to be true today for new families. The Foundation is a font of knowledge about this syndrome...accurate and up-to-date information so helpful and needed by caregivers and professionals. The Foundation builds important relationships with the medical and professional communities to advance understanding of the syndrome to ensure appropriate treatments are provided. And the Foundation and families support important research by professionals to further even greater understanding of CdLS. I don't know what we and others would do without this important organization.
When my daughter was 5, I located literature that said life expectancy for individuals with CdLS was 5 years old. That was frightening news and fortunately someone led me to the Foundation. From Foundation staff I learned that this information was very dated and within a week was on my way to a CdLS Conference to learn all I could. There I met the most wonderful staff and doctors who were a wealth of information on the syndrome and helped me understand important screenings and treatments that I should pursue for my daughter. From that first welcoming call, I've felt the staff had my daughter's best interests at heart and I know they convey that same concern and caring to all who call. They indeed provide a lifeline when people most need one.
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*