When I look back over 2016, it brings a smile to my face when I see what we, the National Foundation for Ectodermal Dysplasias (NFED) family, have accomplished. We have truly been blessed with a wonderful year. You helped us accomplish many goals. We are truly grateful that each of you are a part of our family.
Happy Holidays!
Wishing you and yours all the beauty of this magical holiday season. We wanted to share with you in this video some of the magical people that we get to help all year long. Happy holidays from all of us at the National Foundation for Ectodermal Dysplasias!
Volunteers Give Forty Years of Board Service
This month, we thank four volunteers for their years of service and dedication to our Board of Directors (BOD). Three of them have served 10 or more years. They helped lead the National Foundation for Ectodermal Dysplasias (NFED) through the transition after our founder, Mary K. Richter, retired in 2010. Serving on a Board requires…
Get Baking With Cookies for a Cure
Love cookies? (Who doesn’t?) Want to support the National Foundation for Ectodermal Dysplasias (NFED) and spread awareness for ectodermal dysplasias? We have the perfect fundraising opportunity for you — cookies for a cure.
Ten Reasons to Give Before December 31st
10. GIVING TO THE NFED IS CONVENIENT You can give online, by calling Brittany at (618) 566-6874, or by sending in a check to: NFED, 6 Executive Drive, Suite 2, Fairview Heights, IL 62208-1360. The most convenient and sustainable donation you can make is by becoming a monthly contributor through our Smile Makers program. Simply…
Expanding Our Volunteer Team in 2017
Service and giving are qualities that are greatly cherished by all of us at the NFED. You, as a volunteer, help our organization by lending a kind helping hand – and our only payment to you are wages of love, gratitude and knowing that you are making a significant impact on lives. Everyone has such busy…
Babies With XLHED Treated In Utero
What’s going on with the research for x-linked hypohidrotic ectodermal dysplasia (XLHED) and EDI200? Last January, I announced that Edimer Pharmaceutical’s Newborn XLHED Clinical Trial did not achieve the outcomes which we had hoped for. In that trial, they dosed newborns who were affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) with a protein called ED1200…
Post Traumatic Growth
A positive result can come out of experiencing trauma or difficulty and working through the resulting emotions. This is called post traumatic growth, or PTG. Learn how this applies to ectodermal dysplasia and how you can nurture it.