How to Turn Volunteering into a Presidential Service Award

Helping the NFED as a volunteer can add a Presidential Service Award to your resume or college application. We have numerous ways that you could help as a volunteer. Learn how. We offer several toolkits which make volunteering easy.

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.

Doing Everything I Can for Ectodermal Dysplasias

By Debbie Fenoglio I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia. Like many before me, I had not heard of ectodermal dysplasia. It was offered by our dentist as Jackson’s teeth were not erupting and he…

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…