I sat nervously at the conference table, introducing myself to a room of new faces, new faces that I sincerely hoped would help to make accommodations for my daughter when she entered kindergarten in the next year. I had reason to be nervous—we had never found a preschool willing to Read more…
Do you ever wish you had more opportunities for raising awareness about FPIES? Are you ever unsure of where to get started with raising awareness? The last day of February each year is “Rare Diseases Day;” this awareness day sponsored by NORD (the National Organization for Rare Disorders) is a Read more…
Happy 2021 to all! Now a full month into our New Year, we want to invite our community to join us in resolutions to spread FPIES education and awareness throughout 2021! With the state of the pandemic and many of us being homebound, outreach may be a bit of a Read more…
From every corner of our world, COVID-19 has impacted us all in one way or another. As I sit here in my living room, in a state particularly hard hit, the evidence of this impact is all too clear. The stress, the risk of catching this illness, the changes in Read more…
This spiral-bound Workbook was created specifically for families managing FPIES, to help parents and caregivers stay organized and keep track of everything in one place!
Make Like A Zebra and #ShowYourStripes Every year, my daughters and I look forward to Rare Diseases Day. It is such a great opportunity to raise awareness, but I feel like it also is a wonderful reminder to them that they are not alone– there are kids all over the Read more…
As we celebrate our seventh anniversary at The FPIES Foundation, I have been looking back over the years since our beginnings and since the start of my own family’s FPIES journey. I smile as I remember families that have come and gone from our community. Even though they may have Read more…
Paying Medical Bills as Simply as Possible By Margaret Hancock For those navigating FPIES – or any rare disease – hospital, specialist, nutritional, and additional medical bills can be quite confusing and time-consuming. I am grateful for a brief stint that I had with an insurance firm as I learned through Read more…
When navigating through the FPIES reality, one of the more regular activities is a food challenge. When we began introducing foods to our son, several challenges resulted in days worth of medical attention. Now, each and every food introduction we do (whether the food is a typical FPIES trigger or Read more…
We thank you for making every step count by joining with us in our ongoing efforts to build awareness, increase support and advance research for individuals affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) for our 4th annual Global FPIES Day. This Global FPIES Day, we witnessed so many #Steps4FPIES! Whether Read more…