Leaving My Comfort Zone to Advocate For My Family

As a self-described, shy, introvert, Sarah Ward could never have imagined that she would be meeting with Congress to talk about her family’s rare genetic disorder. The passionate advocate shares her journey and why she has found the strength to speak up!

The Value Of One. The Power of Many Voices.

It’s Volunteer Appreciation Week! We celebrate the incredible people who stepped up during a pandemic and helped us advance our mission. Learn what that looked like, what we are planning next, and how you can add your voice!

Sharing Mighty Ronan’s Story Makes All the Difference

Lindsay Claire is the type of mom who would climb a mountain if it meant helping her son, Ronan, who is affected by EEC syndrome. And climb a mountain height she did – all in an effort to raise money for the NFED. She shares their creative approaches and the key to their fundraising success.