World Rare Diseases Day February 28, 2014 Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care. We are not alone. Here at The FPIES Foundation that is something we feel every parent and caretaker should realize. Not only are Read more…
The programs of The FPIES Foundation are centered on the child living with Food Protein Induced Enterocolitis Syndrome. Our programs and initiatives are maintained on a lean budget, minimizing spending while maximizing returns for families. We operate with generous donations of time and talents, all staff- volunteers, advisors and executive are unpaid 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…
Living with FPIES: Advocating for Your Child in School and Childcare Settings Nichole L. Huff, Ph.D., CFLE As a mom of a child with FPIES, one of the hardest decisions I ever made was entrusting someone else to care for my son, living with FPIES, for the first time. And, truthfully, 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…