The CdLS Foundation is the only organization of its kind, providing support, education, and resources for families and professionals providing care for someone with Cornelia de Lange Syndrome. The Foundations is organized, and highly effective in meeting the needs of CdLS caregivers from around the world.
I have been involved with the Foundation since the birth of my son in 2000. They have been there for our family as a sounding board and resource and are phenomenal at bringing affected families together. They are strong advocates and visionaries. They form and support a community. They are professionally run with sound financial practices.
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.
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!
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!
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.