This year, in honor of Rare Disease Day, a family in the FPIES community hosted an awareness event for FPIES. We, at the Foundation, found the event very encouraging and asked them to share their story… Chase’s FPIES Challenge started out as a way for me to help my friends Read more…
Last year we shared some of our favorite tips for keeping your children safe, and included, during the Halloween festivities in our Allergy Friendly Halloween post. Be sure to check it out! This year, many families are participating in the Teal Pumpkin Project, brought to us from FARE. The organization states: “This campaign Read more…
She’s 9-years old. She loves the A-Team and Selena Gomez. And, she has FPIES. Meet Sarah from “Sarah’s FPIES Clubhouse.” We recently had the opportunity to interview Sarah and her mom and learned that Sarah is one courageous little girl with a huge heart, a love for animals and a Read more…
FPIES: A Diagnosis, not a Definition Nichole L. Huff, Ph.D., CFLE As Thanksgiving Day draws near, Facebook and other social media outlets are abuzz with people sharing blessings in their lives. For things both big and small, people are talking about thankfulness. For parents of children with FPIES, however, the anticipation Read more…
Your voice: Be a part of the first FPIES Global Registry! A message from Joy Meyer, Co-Director of The FPIES Foundation You are more accustomed to hearing from The Foundation as a whole rather than me as an individual voice. I am the Co-Director of The FPIES Foundation. I am Read more…
With the help of this caring community of families living with Food Protein Induced Enterocolitis Syndrome, we have developed a set of new awareness cards for families living with FPIES, inspired by families. The business card-sized awareness cards are great for providing simple explanations of FPIES for friends, family, babysitters and Read more…
Our Families’ Beginnings: Joy’s family: Our son, Samuel, was sick for months before we knew his symptoms had a name. Food Protein Induced Enterocolitis Syndrome is what the allergist confirmed after months of trying to pinpoint it on our own, with just the Pediatrician and Dietitian help. We had been Read more…
As May began, the FPIES Foundation initiated the Twitter campaign #IKNOWNOWFPIES in honor of Food Allergy Awareness Week. We asked FPIES families to tell us what they know now that they didn’t know when their child was diagnosed. From the first “I know now” post – “I didn’t know that you could have a delayed Read more…
There are many ways to raise awareness. When explaining FPIES to your child’s pediatrician, you are raising awareness. When you sit down with your child’s daycare provider to explain safety precautions necessary to keep your child as free from reactions during the day, you are raising awareness. The setting doesn’t Read more…
Awareness is Action, and YOU help pave the path! At The FPIES Foundation, we recognize and stress the importance of awareness for this rare disorder. Because FPIES is rare, families can experience difficulty finding medical providers that are familiar with this diagnosis, and can receive poor advice from well-meaning friends Read more…