Global FPIES Day is honored on Oct. 14th every year. Established in 2014, this day is set by The FPIES Foundation to recognize Food Protein-Induced Enterocolitis Syndrome (FPIES) while empowering those living with the diagnosis by providing tools, support, and resources for every day. It is also a day when partners and members of the FPIES community can come together to raise awareness, to share stories and information, and to educate one another about aspects of living with FPIES.
This year, with our theme “Allies for FPIES (#Allies4FPIES), we honored all of those who stand with our community to raise awareness, build community support, expand research, and improve the quality of care for all those affected by FPIES. When living with the diagnosis of FPIES, affected individuals, their families, and the medical professionals who support them rely on allies. Together, we joined with our partner organizations, medical providers and this community and shared resources, educational videos and inspirational family stories.
In addition to sharing our Allies4FPIES Awareness video:
- We joined one of our medical advisory board members Alexia Beauregard, MS, RD, CSP, LD, who has a passion for helping those living with food allergies, as she explored tips and tricks for feeding children with food allergies. She explored nutritional as well as behavioral components that may present difficulties for some affected children, offering creative ideas and solutions for families and the professionals assisting them.
- We watched as Dr. Sergio Negre Policarpo, our global medical advisory board member, as he discussed FPIES on his informative YouTube channel. With subtitles available in many languages, families and professionals alike can benefit from his insights and experiences.
- We heard Dr. Marta Vazquez-Ortiz discuss the innovative, vital work and goals of the BIO-FPIES Study Network! The BIO-FPIES Study Network, a partnership between Imperial College London, GENVIP in Spain, and ten tertiary allergy centers in Spain and Italy, is aiming at improving the diagnosis and management of Acute FPIES.
- We listened as Amanda LeFew, Co-Director of The FPIES Foundation, explored the impact of FPIES on affected children in elementary and middle school classrooms. Pulling from personal and shared experiences, Amanda addresses not only the families of affected students and also the educational professionals that serve them. This presentation explores adaptations for the classroom, creating the student’s medical plan, navigating reactions, and more!
- We reflected on the management of FPIES and breastfeeding as 3 panelists discussed the subject. Alexia Beauregard, MS, RD, CSP, LD discusses nutrition and taking care of mom and baby. Amanda LeFew shares her extended breastfeeding experiences and tips and tricks to help along the journey and Dr. Trill from Free to Feed shares her inspirational message of her research on triggers in breastmilk as well as resources available to nursing mothers!
With greater awareness and education, appropriate quality of care, and daily management of FPIES becomes more widely understood by families and professionals alike. The FPIES Foundation is committed to expanding our community’s knowledge of FPIES through diverse online learning tools. Be sure to check out what new webinars we have in store for you in the coming months!
Together, we can all be allies for one another, across our local and global communities. Together, we are the voice and together we will continue to educate, advocate, and support.
This post was written by The FPIES Foundation Board.