While attending an online event, Aspen Ideas: Health 2022, there was a discussion panel on the topic, “Partnering with Patients Strengthens Science”. One of the panelists, Sneha Dave, in discussing the importance of the condition community, said these words: “One thing we can’t forget – while we are waiting for a Read more…
A few months ago, we were introduced to Kallie and her mom, Rachele. Kallie introduced us to her breathwork cards and videos. Kallie is 7 years old and she loves swimming, playing with her friends and sister, horseback riding, creating art, and she loves doing breathwork with everyone in the Read more…
Talking about FPIES is a 3-part blog series by Angelika Sharma, FPIES Foundation volunteer. Explaining FPIES to your child You may not have conversations with your baby or small child yet, but you are already communicating with them about their FPIES every day. In part three of our Three-Blog-Post Series Read more…
Talking about FPIES is a 3-part blog series by Angelika Sharma, FPIES Foundation volunteer. Effectively sharing about your FPIES needs In the early days after an FPIES diagnosis, parents learn so much: from information about the diagnosis to navigating their new everyday life. As their days are re-shaped and the Read more…
Talking about FPIES is a 3-part blog series by Angelika Sharma, FPIES Foundation volunteer. How to Explain FPIES to Others As the parent or caregiver to a child with FPIES, you regularly find yourself having to explain the needs of your child: first with family and friends, then in places Read more…
Recently, we learned of a parenting book for parents of children diagnosed with FPIES. We had an opportunity for an interview with author, Angelika Sharma, and here is what she shares about her book, “A Mother’s Guide to FPIES”. Tell us a little about your book and your aim in Read more…
Planning Your Summer Adventures, When FPIES is Your Uninvited Travel Companion Backpacks are starting to gather dust, you’ve inflated the kiddie pool . . . . summer must be here! At our house, we are always thrilled for the arrival of summer. It allows us to take a breath, stock Read more…
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…
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…