Imagine going 37 years without knowing why you faced so many health struggles. That was Lindsey’s life until she finally got answers. In this blog, she shares her journey from silence to strength, how she found community, and why she’s determined to advocate for her kids.
Taking Big Steps Forward: 2025 NFED Family Conference
Nearly 300 attendees, including over 100 first-timers from five countries, gathered in Minneapolis for the 2025 NFED Family Conference. It was a heartwarming reunion filled with laughter, learning, advocacy, and unforgettable moments. Together, we took big steps forward, and left feeling inspired, supported, and filled with hope for what’s ahead.
Why Lindsey and Keegan Keep Coming Back to Family Conference
Curious what brings families back to the NFED Family Conference year after year? Keegan and his mom, Lindsey, share why this event means so much to them and why after six years away, they’re attending this summer’s Conference.
How Music Helped Ally Blossom with EEC
Ally has never let ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome define her life. Thanks in part to the NFED community, music has helped Ally blossom into an inspiring young woman. She’s now on track to become a music therapist, where she’s sure to help and inspire countless others.
XLHED Research Success: The Power of Family Participation
Discover the incredible journey of XLHED research, where dedicated families and tireless efforts have led to life-changing breakthroughs. This inspiring story highlights how your participation can help shape the future of XLHED treatments. Don’t miss it!
You Wanna Be Where Everybody Knows Your Name: Family Conference 2025
The NFED Family Conference is more than an event—it’s where connections thrive, and worries melt away. Like the Cheers theme song, it’s a place “where everybody knows your name.” Don’t just take Kelley Atchison’s word for it. Listen as NFED families share the impact the Conference had on them.
Family Conference is a collection of stories of hope- we would love to see you there!
You Inspire Me: Cue the Happy Tears!
Let’s look back at joyous moments of 2024 brought to us by talented teenagers, a miracle baby, dedicated parents, a dad-daughter cycling team and others. From a clinical trial to personal milestones, their stories inspire and capture the heart of the NFED.
Rising to the Challenge: Emily’s Inspiring Journey from Advocate to Civics Bee Champion
Dad’s daily civics quizzes transformed a young girl’s mornings into learning adventures, ultimately leading to a national championship and a life-changing scholarship. This inspiring story of a young girl’s dedication and achievement will leave you amazed.