By Dr. Kay Motil Definition Food allergy, or hypersensitivity, refers to an abnormal immunologic reaction to food. Etiology Allergic reactions to food are caused by IgE activation against specific food proteins or non-IgE activation of other chemical processes involving eosinophil or T-lymphocyte blood cells. Clinical Features IgE reactions are rapid in onset, beginning within minutes…
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…
Career Reflections – Tyler Brown
An interview with Tyler Brown, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who is an aerial lineman. I’m an aerial lineman for Haverfield Aviation based out of Gettysburg PA. I travel all over the country working on high voltage power lines from a helicopter. Aerial lineman work from a platform attached to a helicopter,…
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…
It's Time For a Change: Advocating for Children with Rare Diseases
By Becky Abbott I’m frustrated and sometimes angry. I’m angry not only as a parent, but as a member of the rare disease community. Our journey started like so many other families who have children with rare diseases. It took several years, many doctor appointments and documenting symptoms. Finally, after being referred to a pediatric…
The Moment My Son Taught Me About Strength
By Seth Ferris I live in Brooklyn, New York. And during any given week, any given day, I come in contact with millions of people, some of whom are not too shy about telling a complete stranger what they think of them. You bump into somebody and get a “Hey! Watch it!” or worse. You…