It was a beautiful afternoon and my girls were so excited– the long-awaited baking had begun! Since they both have separate safe food lists and separate baking equipment, each girl got her own turn in the kitchen with mama. My eldest tied on her apron, read the recipe, and started Read more…
When Life Hits the Fan A guest post by Honor Genetski I’ve been getting my share of lessons in acceptance lately. I choose to see it this way rather than as a run of bad luck because without fail I am more grateful, more clear-seeing, and more resourced on the Read more…
Things to do in the Hospital By Zack Skrip At the FPIES foundation, we know that hospital visits can be an unfortunate part of our lives. Many of us have hospital bags packed so that we can trundle our little ones off to the hospital as quickly as possible at Read more…
Every family is unique and weaves an important piece in our overall understanding of FPIES as well as the impact– medical and non-medical– this rare diagnosis has on our families, children and professionals. As you read the story that follows, please remember that though your family’s story may differ in Read more…
What can you tell me about NoTube Organization? NoTube supports families with children with tube dependency, working with the “Graz model of tube weaning”. We help children who are “stuck” on a feeding tube in absence of a medical need for it. Although the children are able to eat from a Read more…
On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses. The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living Read more…
Over the last year we have been inspired by the impact of your unique talents and hard work as you continue building awareness to FPIES. As we approach our 2nd annual Global Day, we wish to share some of these events with everyone, in hopes to inspire you, that you too Read more…
Over the last four years, we have watched our little ones grow right alongside the Foundation. So many of the new families we “met” after our founding now contact us with their inspirational stories– we proudly hear the stories of children outgrowing FPIES and the stories of children thriving in Read more…
FPIES: Simple Words, Complex Realities By Nichole L. Huff, Ph.D., CFLE One evening last week, in reviewing the papers sent home in my kindergartner’s daily folder, I noticed a flyer for a school fundraiser. An ice cream social. On Friday my son could have a big scoop of ice cream from a Read more…
Food Allergy Awareness Week (May 10-16th) has recently been expanded to include FoodAllergy ACTION month. Plus, this year a National FPIES day on May 4th has been included to honor the month of Allergy Awareness. National FPIES Day is in addition to Global FPIES Day, on Oct.14th, established by The Foundation in 2014. Two Read more…