A Cause Worth Fighting For!

Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!

Volunteer Spotlight: WOMEN4GIVEN

We are thrilled to have started a relationship with the Women4Given in O’Fallon/Fairview Heights, IL. These ladies were and will continue to be a tremendous supporter of the NFED.

Dad Works to Be Walking Billboard for NFED

Seth Ferris lives in Brooklyn, NY and is an avid volunteer. He not only volunteers for the National Foundation for Ectodermal Dysplasias (NFED) but also for the local soup kitchen, American Red Cross, and the Ambulance Corp. However, his primary focus and passion belongs to the NFED. Seth has been involved with the NFED for…

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…

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…

Page 1 of 212