FPIES and Allergies

Simple, real-life action items for parents, family, and friends who want to make a meaningful difference for the FPIES community this year.

If you have ever sat in an emergency room watching your baby turn pale and limp, repeating the words “Food Protein-Induced Enterocolitis Syndrome” to a doctor who has never heard of it, then you already know why awareness matters.

May 4th is National FPIES Awareness Day. It is the one day of the year when our small but mighty community gets to step into the spotlight and say, “We are here. Our kids are here. And this rare food allergy deserves to be on every pediatrician’s radar.”

Whether you are a fellow FPIES parent, a grandparent, a teacher, a friend, or someone who just learned what those five letters mean, here are real, doable ways to help, give back, and spread the word this year.

A Quick Backstory on National FPIES Awareness Day

The very first National FPIES Awareness Day took place on May 4, 2015, after the International FPIES Association (I-FPIES) led a national petition that gathered more than 1,000 supporters. The U.S. Senate officially designated the day with the passing of Resolution 129, thanks to families in New Jersey and Pennsylvania who shared their stories with their senators.

Since then, every May 4th has been dedicated to one shared mission: educating families, doctors, lawmakers, and the wider public about a food allergy that still flies under the radar far too often.

5 Ways to Spread the Word

You do not need a big platform to make a difference. You just need to show up in the spaces you already have.

1. Share your story on social media. Use the hashtags #FPIESAwarenessDay, #FPIES, and #May4th. A single Instagram story or Facebook post from you reaches dozens of people who have probably never heard those five letters before.
2. Wear teal and gray. The official FPIES awareness ribbon is teal with a gray stripe. Pin one to your diaper bag, add a teal heart to your profile picture, or paint your nails in awareness colors.
3. Print the free awareness materials. I-FPIES offers free coloring pages, fact sheets, and educational tools through FPIES University, their free video and resource library. Bring a few copies to your pediatrician’s waiting room.
4. Hand a fact sheet to your child’s pediatrician. Both I-FPIES and The FPIES Foundation offer free, downloadable handouts written specifically for medical professionals. Awareness inside the exam room is where diagnoses get faster.
5. Tag your village. Tag the family members, sitters, teachers, and friends who have learned this allergy alongside you. Awareness ripples outward from the people who already love your kid.

Ways to Give Back and Donate

If you are in a position to donate this year, even a small amount goes a long way for these mostly volunteer-run organizations. Here are the groups doing the heavy lifting for our community:

• International FPIES Association (I-FPIES) is the leading nonprofit advocating for FPIES patients, funding research, and pushing legislation forward. Donate at fpies.org.
• The FPIES Foundation focuses on family support, educational resources, and the Global FPIES Patient Registry, which contributes valuable data to medical research. Donate at fpiesfoundation.org.
• Food Allergy Research & Education (FARE) funds broader food allergy research that benefits the FPIES community. Visit foodallergy.org.
• Kids With Food Allergies (a division of AAFA) offers community resources, recipes, and advocacy tools for families managing FPIES, EoE, and other food allergies. Visit kidswithfoodallergies.org.

You can also dedicate a donation in honor of an FPIES kiddo you love. It is one of the most meaningful gifts a grandparent, godparent, aunt, uncle, or family friend can give.

Advocate for Legislation That Matters

For so many FPIES families, elemental formula is not optional. It is the only safe nutrition. Yet insurance coverage is wildly inconsistent across states, leaving families paying hundreds or even thousands of dollars out of pocket every month.

The Medical Nutrition Equity Act (MNEA) is bipartisan federal legislation that would require public and private insurance to cover medically necessary foods, including elemental formula, for inherited metabolic disorders and digestive conditions like FPIES. I-FPIES is an official partner of the effort.

You can take action today by:

• Reading more about MNEA on the I-FPIES Advocacy page.
• Using the AAFA Advocacy Action Center to email your representatives directly.
• Sharing your family’s FPIES story with your senators and representatives. Real voices move policy.

Show Up for an FPIES Family You Know

Sometimes the most meaningful awareness does not happen on the internet. It happens at the kitchen table, at the birthday party, at the playground. If you love a family with FPIES, here are small things that mean everything:

• Read up on FPIES so they do not have to explain it again.
• Ask before bringing food to a gathering, and be okay with the answer.
• Keep their safe foods stocked at your house.
• Learn what a reaction looks like and what to do.
• Just say, “I see how hard this is.”

For loved ones who want to learn more, The FPIES Foundation has a wonderful set of free educational materials in their Learning Library orr check out more Allergy Information here.

This May 4th, Pick One Thing

The truth is, awareness is not just hashtags and ribbons,it is the pediatrician who recognizes the symptoms on the very first visit, it is the ER nurse who knows what an FPIES reaction looks like, it is the grandparent who reads the ingredient label without being asked and it is the senator who votes yes on formula coverage.

Every share, every donation, every conversation builds a softer, safer world for our kids.

This May 4th, pick one thing from this list and do it. That is enough. That matters.

From one allergy mama to another, thank you for showing up. 🩵

Even if you don’t have a child with FPIES, but know someone who does, join our FPIES and Allergies Community to show your support.