Involvement: Get started today!

By Terri Matus, Grandma of Allyson Kelso, Member, Family Support Council and Co-Chair for Rally for Ally There are many reasons to volunteer one’s time for an organization.  The obvious one is to be helpful and to assist others in order to enhance the programs provided by the organization, namely, the NFED.  I like to think…

We are Family! My Brothers, Sisters and Me!

By Chris and DeAnn Huxman In 2001, our second son, Tyler, was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. We had never heard of EEC, had no information about it, and had no idea what the future would hold.  We didn’t know where to turn or where to find information. While searching the web for anything about EEC,…

Who Could Say "No" to Mary Kaye Richter?

By John A. Stith, M.D. , Professor, Pediatric Otolaryngology Saint Louis University School of Medicine, NFED Board of Directors and Patient Care Council I have been privileged to serve the NFED as a member of the board of directors for several years. It seems like yesterday when Dr. Tim Reichert invited me to consider becoming…

A Tribute to our Scientific Advisory Council

Every once in a while it is important to sit back and reflect on how blessed we are to have such wonderful professional commitment to our organization and the families we serve.  The Scientific Advisory Council (SAC) and Patient Care Council (PCC) are two examples of professional dedication to the NFED.  The PCC focus is…