Corneal abnormalities are a major clinical issue encountered by patients affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. EEC is caused by dominant mutations in the p63 gene, meaning that EEC patients have one copy of the normal p63 gene and one copy of the mutant p63 gene. It has been suspected that removing the mutant p63…
FREE Things to do in St. Louis
If you are coming to St Louis before Family Conference or staying after…check out these fun things to do in St Louis. City Garden – Downtown: This outdoor garden includes art, plants and several water features. The water features include a splash pad and two wading pool areas. This is approximately a 25-minute drive from the…
Welcome Home!
By Sue Kluzek I don’t know about you, but I am getting very excited about our NFED Family Conference this summer! It’s an exciting time for all of us. We (the NFED) are celebrating our 35th anniversary. We have new programming and a new format for some of the conference. It’s going to be great!…
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…
Dear NFED volunteers,
We can’t think of a lovelier way to acknowledge all of the hard work you do than by setting aside the month of April to recognize and thank you and all of our volunteers. Just last year alone we had 364 volunteers who dedicated more than 3,652 hours to the NFED. That is truly amazing! …
Need to be Needed? Beverly Meier's Response?
By Cathy Deters The year I retired from a teaching career (2008), I knew I would need to do something to occupy the time I had spent in the classroom. There was a void in my life and I wasn’t sure how to fill it. My dear friend, Beverly Meier, suggested that I volunteer for…
The NFED Doesn't Need You!
Who needs volunteers? Not the NFED. We can do without volunteers! No need to ask for a helping hand, our staff can do it all. Why create a strong Volunteer base? Volunteers are overrated, a nuisance, and a royal pain. Today is a celebration of mischief and misbehavior. It has become tradition on the first…
15 Reasons to Attend Family Conference
I could list way more than 15 reasons why you join meet us in St. Louis this July. But, this list will get you started. Tour St. Louis: Did you know St. Louis has cheese you can get nowhere else? Refresh and Recharge: Take a few days off from your busy schedule and relax and…