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 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 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 Read more…
The FPIES Foundation joined as the National Organization forRare Diseases (NORD) andTexas Children’s Hospital hosted a Twitter Chat aimed at helping navigate emergency room visits with a Rare Disease. NORD started the chat with some statistics that show rare diseases aren’t that rare. They 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, 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 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 Read more…
**August 2017 Update: Kindrdfood has closed its doors. Tara is still seeing patients through video conference, please contact her at taramccarthyrd@gmail.com A company has emerged to offer help to families who have to manage changes in their diet due to a medical Read more…
Contains: FIVE ingredients: millet, water, safflower oil, pure maple syrup, and mini-chocolate chips. Does NOT contain: egg, baking soda, baking powder. Inspired by a recipe from a fellow FPIES mom (and her blog), and her recipe for Merry Muffins, I learned to create several Read more…
Thank you so much for your impact on making Global FPIES Day such a success! Our education, support and awareness efforts, coupled with the impact of your participation, reached a multitude of individuals affected by FPIES, their families, and the Read more…