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 cure, while we are waiting for novel therapeutics, we cannot forget the quality of life and peer support that we very desperately need. So, while it’s critical that we’re focusing on research, we’re investing in that, we also need to make sure that, those of us here right now who have lived with Colitis for 18 years to have that network…is why I created Generation Patient.” ~Sneha Dave, Executive Director – Generation Patient
It spoke to my heart! It not only was so nice to hear from others who share a common goal, but it is also quite literally why I sought to help create The FPIES Foundation! We, as parents of children living with this diagnosis, recognized this amazing community of other parents and what they had to offer individuals and families going through this today, while adding to the growing understanding of this rare allergic condition, strengthening it for individuals and families affected in the future. We set out to provide education, support, and advocacy to empower individuals, families, and the medical community…and the work continues! With many thanks to this amazing community, we can continue to bring new and needed resources and tools for support and empowerment.
For Global FPIES Day 2022, we have compiled our “Top 10” Community-powered resources:
#1. Visual representations of the community provided feedback, YOUR feedback, from the survey conducted by the FPIES Foundation in 2020 which sought to identify the challenges and unmet needs of FPIES from parents and individuals living with FPIES. Be sure to look for these on your social media pages!
#2. Volunteer, mom, and author, Angelika Sharma wrote a valuable 3-part blog series about Talking about FPIES:
Talking About FPIES- Part One: How to Explain FPIES to Others
Talking about FPIES- Part Two: Effectively Sharing Your Needs with FPIES
Talking About FPIES- Part Three: Explaining FPIES to Your Child
#3. The Adults with FPIES page was developed by Co-Director Amanda. Hearing the need from you- older children and adults of all ages living with FPIES- we sought to develop more resources and update current resources to reflect adults in addition to infants/children, we continue to update our online and print materials as well.
#4. Food allergy Podcast opportunity! Lisa from Food Allergy PI, whose goal is to continue to bond the food allergy community through shared experiences, sat down with Amanda who shared her daughters’ diagnosis story and how that led to the formation of the FPIES Foundation (episode 22).
#5. Breathing In Harmony and Hope – a few months ago, we were introduced to Kallie and her mom, Rachele. Kallie introduced us to her breathwork cards and videos. Read more about her work on our blog: Interview with Breathing in Harmony and Hope.
#6. Dietitian and mom, Mun Cho wrote a poignant article, “Caregiver Anxiety and FPIES” for the Foundation which addresses caregiver anxiety; and volunteer Angelika Sharma translated this into a YouTube video to add to our resources which increases awareness of the quality of life of individuals and families affected by this allergy.
#7. Manufacturers hear your voice too! Big Green Organic Foods, the makers of Millet pasta took notice when you contacted them letting them know important their pasta was to your families and connected with us to learn how they can learn more about FPIES and reach more families with their allergy-friendly products.
#8. Inspired to make a difference for other families, parents of children living with this diagnosis such as Co-Director Amanda, utilize what they learn along the way to develop resources for other parents. Amanda outlines steps you can take and resources available to you when you are beginning to navigate FPIES at school, in this article: Navigating FPIES in the Classroom – Preparing for a New School Year.
#9. Here at the Foundation, we are continuously working on new print and online resources as well and over this past year we released new resources to meet the needs of all affected by FPIES:
- New awareness pamphlets- great for awareness events, conferences, and bringing to Providers and anywhere you are providing education on FPIES.
- An updated About FPIES to reflect and recognize older children and adults living with this diagnosis which also meant an update for our About FPIES Awareness Rack cards
- Self-advocacy cards- initially developed with a superhero theme, a volunteer gave these cards a fresh look!
Resources are always available, accessible, and free to you on our website pages. Additionally, print resources are available to be mailed to you for free.
#10. And, speaking of easy access- you can access all our recorded videos in our newly updated FPIES Online Learning Library! If you have a video you would like to contribute, or a topic you would like to see, we would love to hear from you. There is power in the patient community!
This post was written by Joy Meyer. Joy is the Co-Founder/Co-Director of the FPIES Foundation.
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