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…
Planning meals for children can be challenging. You have to come up with a dish that is not only appealing to them but is also packed with nutritious ingredients that sometimes your child probably doesn’t like, and these difficulties grow tenfold when it comes to prepping meals for children with 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!
Rare in How We Care The theme of this year’s Rare Diseases Day was “Show Your Stripes.” I was so excited when I first learned this– I feel like this theme really reflects our rare community, particularly our FPIES community, where I see all of you showing your stripes each Read more…
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…
This gap between patients and clinicians was evident upon my son’s diagnosis, but was becoming more clear the more we learned about FPIES. Fortunately, the FPIES Foundation created the FPIES Global Patient Registry
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…
Parental psychosocial distress: A needs assessment for parents of infants 0 to 1 year with food allergies and intolerances. A food allergy diagnosis can be a life-altering experience. The stress involved for the child and their parents has been underappreciated. We recently learned of a new research study examining parental 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…
Halloween is one of my favorite days of the year. I love holidays in general, and even though Christmas will always have a special place in my heart, there are some pretty big expectations wrapped up (pun intended) around December 25. Big extended-family get-togethers, possibly involving travel, a fancy dinner Read more…