Families Use Facebook to Raise Needed Funds

This year, we asked our families to help us raise money during Ectodermal Dysplasias Awareness Month. All they had to do was set up a Facebook fundraiser, which took just a few minutes. Nine families answered our call and generated about $8,000 for the National Foundation for Ectodermal Dysplasias! Thank you to the Andrews, Claire,…

Volunteer Spotlight: Our Folders, Stuffers and Filers Oh My

When we asked some of our office volunteers why they volunteer for us, they mentioned an array of reasons from making a difference, helping others and learning new things. We welcome their assistance more than they ever know. Their help has been especially valuable during some of our hectic seasons, like the Family Conference, fundraising…

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…

Our Voice on Capitol Hill

Becky Abbott is leading efforts to help NFED families understand their insurance benefits and educate legislators for coverage for ectodermal dysplasias.

Volunteer Spotlight

Our office volunteers show up on short notice to fold letters from appeals to special events, to stuff and address thousands of envelopes we mail each year. They relentlessly give of their time and help wherever needed which makes a great difference for our staff. They help with creating silent auction baskets, copying, filing, folding…

Volunteer Spotlight: Our Website Committee

Building an all-new NFED.org is a major undertaking! Luckily, we have five volunteers who are advising us at every step of the way. The research phase of the project began in June of 2015. We are excited about how the site is developing. The big reveal will be in November. For their hard work and…

Meet the People Who Helped Plan the 2012 Fam Con

2012 Family Conference Committee July 18-21, 2012 Orlando, Florida Our Family Conference Committee offered lots of great ideas for this year’s National Family Conference in Orlando. Because of their input, we have added a track for young adults and a “buddy” program where we will pair up veteran families with new families at the conference….