An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.
A Summer of Ectodermal Dysplasias Research
It’s definitely a busy summer for the National Foundation for Ectodermal Dysplasias (NFED)! If you follow our communications, you know we are going to be in Washington D.C. in July for the Family Conference and a historic first, Ectodermal Dysplasias Advocacy Day on Capitol Hill. Those are both incredibly important and major events for us….
Webinar: Advocating for Ectodermal Dysplasias
Presenters – Becky Abbott and Beth Pond, Chairs, NFED Advocacy Committee This webinar took place on Tuesday, May 16, 2017 and was recorded. Our advocacy goal is to get a federal law passed that would guarantee that insurance companies would be mandated to pay health insurance benefits for necessary medical care and treatment due to…
A Parent’s Persistence Pays Off
Armenian eleven-year-old artist, Nika, has already had 4 sets of dentures thanks to her parent’s persistence and her dentist’s participation and willingness to go on the dental journey.
8 Tips for Getting Your Child To Wear Dentures
We asked our families for their best advice. Here’s what they said. Bribery! Determine treats or prizes that the child would earn for wearing their dentures “x” amount of time each day. Increase the times until he or she is wearing them all day, every day. You could do a star chart if they are…
We Appreciate You
On behalf of the NFED, I would like to convey our warmest gratitude for all the wonderful things you have done for us over the past year. Big things and small things, they all mean a lot to us. Your generous donation of your time and expertise helps us accomplish our mission every day. Since…
Freshman Entrepreneur Raises Money to Honor Sister
Avani Deshpande is not your typical ninth grader. She’s a compassionate entrepreneur who is raising awareness and funds for ectodermal dysplasias in honor of her sister. Avani’s passion for volunteering arose from watching her younger sister Matali live with ectodermal dysplasias. She wanted to make a difference by raising funds and awareness for the National…
Dentures for Kids
The NFED has always strongly advocated that children with ectodermal dysplasia get dentures by the time they start Kindergarten. Find out why and how the NFED can help pay for them.