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…
According to the FPIES Global Patient Registry, caregivers/patients report an average of 1-5 months, with several families taking up to a year, for a child to receive an FPIES diagnosis. A year to diagnosis. A year of experiencing symptoms and reactions. A year looking for answers and support. The FPIES Foundation is 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…
An interview with co-authors of the newly released book “Sense-ational Mealtimes” Denise Stapleton, PhD, Accredited Practicing Dietitian & Gillian Griffiths, Occupational Therapist.** Mealtime should be enjoyable, yet some children struggle,and their families struggle. Mealtimes for some families are fraught with ongoing grimacing, gagging, distress, anxiety, worry, frustration and anger. Do these phrases sound familiar? “He Read more…
Every year, we participate with the Rare community to celebrate Rare Disease Day! This annual global event on the last day of February aims to, “raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives”. (What is a Rare Disease) The theme for Rare Disease Day 2015 Read more…
In October, The FPIES Foundation was honored to attend the Annual North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) meeting. NASPGHAN brings pediatric training and advancements to this yearly conference. We had the privilege of meeting and speaking with several hundred compassionate Pediatric Gastroenterologist Practitioners, Nurses, and Nutrition Read more…
The FPIES Foundation has participated in several food allergy awareness events this fall! On September 13th The FPIES Foundation was once again honored to provide families with FPIES information on at Boston Zoo on a day for families living with Food Allergies sponsored by Boston Children’s Hospital FACET program. October, along Read more…
Today, on Global FPIES Day, at The FPIES Foundation, we are proud announce the official proclamation for the day. The FPIES Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community. Collaboration among medical professionals, families Read more…