My Nonprofit Reviews

It seems like yesterday that we received the diagnosis of Cornelia de Lange Syndrome (CdLS) for our daughter, Iselen, who turned 27 years old this year. She received a confirmation of a diagnosis of CdLS when she was 3½ when we attended our first Cornelia De Lange Family Conference in 1996.

The geneticist who gave Iselen her provisional diagnosis of CdLS provided contact information for the CdLS Foundation. I called the Foundation the next day and will never forget when the Family Service Coordinator answered the phone. I was tearful and worried that our daughter had a complex and rare disorder. The welcome in her voice and the reassurance I heard over the phone, opened the door for us to look at a future that no longer seemed bleak and frightening. I knew there was an organization that would bring support and information for our family and help us look ahead to the future.

Iselen has faced medical, developmental and behavioral challenges throughout her life. Through the CdLS Foundation, we have gained important knowledge about CdLS, learned about how CdLS effects our daughter, and have received critical information about the unique medical, developmental and behavioral issues our daughter has faced and may face in the future. It has been important for us to have a good source of information to help us navigate the many systems on behalf of our daughter to assure her health and welfare.

We have been able to share information about CdLS that we received from the Foundation with professionals including medical providers, teachers, physical and occupational therapists, and service providers. The CdLS Foundation has provided information that is based on current science, pertinent to what we have needed, and readily available when we asked for it.

The CdLS Foundation exists and functions for the welfare of individuals with CdLS and their loved ones. I served as a member of the Board of Directors and observed the commitment of the Executive Director, the staff of the Foundation, and the many other individuals who volunteer their time and effort to help the Foundation meet its aim of "Reaching Out, Providing Help, and Giving Hope".

Thank you for your time and attention.

Kari Cunningham-Rosvik MN ARNP