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 moved on, they often leave behind invaluable tools for the FPIES community and their voices have helped to set a tone of solidarity for future families that come after them.
I am humbled as I recall practitioners whose drive and determination to raise awareness for FPIES has never faltered, and who have cared for our children as passionately as they care for their own.
I feel validated as I continue to watch families support other families, and to see resources from our Foundation help these parents to advocate daily for their children.
In all these years past, and I am quite sure in all the years to come, there has been and will always be an underlying current flowing through our FPIES community, a message saying, “We’ve got this.”
Parents are constantly reaching out to one another to share new ideas, tried and true recipes, and day-to-day tips for living with FPIES. When a parent learns something new, reads a just-released medical article or discovers a food or food product they had not previously heard of, the support boards light up as knowledge is shared. One of my favorite quotes by George Elliot embodies this idea best: “What do we live for, if it is not to make life less difficult for each other?”
Looking ahead to another Global FPIES Day this October, our message continues to build on Elliot’s concept, focusing on, “FPIES: This is How We Do It.” The greatest strengths of our community– passions for creativity and innovation, as well as the drive to share our knowledge with others– will be showcased in the name of furthering FPIES awareness and education, both locally and worldwide.
Featuring video, audio and written resources that detail how to manage daily life with FPIES, we seek:
- To assist new parents in finding their footing as they begin to assemble resources for living with FPIES,
- To support seasoned families and their children as they navigate new developmental milestones through the lens of life with FPIES,
- To aid practitioners in enhancing their understanding of the day-to-day obstacles often faced by those living with FPIES, and
- To help communities achieve a more comprehensive understanding of FPIES as a diagnosis, as well as how they can help to provide safe spaces for affected children to grow and thrive as active participants in recreational, educational, and social experiences outside of their homes.
In just a few weeks, I will drop my kids off for their first day of school, armed with resources and skills to keep themselves safe and to fully experience all that their new classrooms have to offer. I am able to do this because of the creativity, passion and innovation shared throughout our community. Together, we will continue to be the voice for one another and for all of our children. Together, we’ve got this. And through FPIES awareness and education, this is how we do it.
As always, we invite parents and practitioners, teachers and therapists, and other key community members, to share presentations dedicated to our theme outlined above. If you would like to contribute, please submit a video or audio presentation by September 23rd. For questions and inquiries, please connect with us at firstname.lastname@example.org
This post is written by Amanda LeFew, Co-Director of The FPIES Foundation.