Be the Change! Build our Community!

By Lea Richardson, Community Engagement Manager The NFED recently joined Pinterest and I have been amazed at the number of inspirational quotes for and about volunteers.  Some are so great in fact, that I thought I’d share some with you. Some quotes are words of wisdom while others can be attributed to the wise people…

Animals for Ava: Paying it forward!

By Angela and Dante Puorro Our daughter was diagnosed with hypohydrotic ectodermal dysplasia at the age of 19 months.  She was born without teeth, sparse hair and underdeveloped sweat glands. I still remember the day vividly. It was six years ago, at 3 o’clock in the afternoon on the Friday before Labor Day.  Ava’s pediatric dentist introduced us…

Celebrating 15 Years of Halloween Bash Success

When Ryan was a year-and-a-half old, and was medically stable, Ruth and Keith Geismar started planning the very first fundraising event to benefit the NFED. Ruth wanted to give back to this organization that had embraced her family and Ryan.  Now, we are close to wrapping up the NFED’s 15th annual Halloween Bash. We would…

When Life throws you a Lemon, make Lemonade!

By Henry and Catherine Bourgin Twelve-year old Henry is affected by XLHED, as is his mom, Catherine. They live in McLean, VA. Henry would like to share his thoughts on having a lemonade stand with baked goods during summer break: “When I’m at the lemonade stand, we like to talk to each other and when other people come we’ll have conversations….

Pay it forward! Share the Light!

By Dee Dee Olsen I have led a most beautiful life. I have been graced by God with loving parents, devoted sisters, brothers-in-law, six incredible nieces and nephews, treasured friends and a husband who embodies strength, hard work and consideration.  We brought three little people into this world. They breathed new dimensions of love and…