“Never doubt that a small group of thoughtful, concerned citizens can change world.Indeed it is the only thing that ever has”.
The FPIES Foundation is a collaborative effort of several families affected by FPIES whose relentless journey has sparked the desire to help other families find their way. FPIES is often under recognized and poorly understood. The organization’s founders identified a dire need for tangible support resources for both the affected families and the medical community.
The founding board of directors was comprised of these eight original families (listed below), spread as wide across this country as we have children spread across the spectrum of this allergic syndrome. We knew it was vital to the foundation to have the insights from collaboration of voices. These voices of professionalism, coupled with their diverse talents created the cornerstones of The FPIES Foundation. Alongside our founding board, we invited esteemed medical advisors comprised of experts in the field of food allergy and FPIES diagnosis and management. We have always been very committed to providing a medically credible and reliable resource for this rare, oftentimes isolating diagnosis. Read more about the history of The FPIES Foundation in an article written by founders Amanda LeFew and Joy Meyer, “Our History: Building a Strong Foundation”
Our Founding Medical Advisory Board
Sakina S. Bajowala, MD is Board-Certified in Allergy and Immunology. Kaneland Allergy and Asthma Center is Dr.Bajowala’s pracitice in North Aurora, Illinois.
J. Andrew Bird, MD is Board-Certified in Allergy and Immunology. Dr.Bird is an Assistant Professor of Pediatrics of the Food Allergy Center at Children’s Medical Center Dallas, Texas.
April Clark, RD/LD is a Registered and Licensed. April is a Clinical Dietitian of the Food Allergy Center at Children’s Medical Center Dallas, Texas.
John J. Lee, MD is Board-Certified in Allergy and Immunology. Dr. Lee is a Co-Director of the EGID Program (Eosinophilic Gastrointestinal Disorders) at Children’s Hospital Boston, Massachusetts.
Fred Leickly, MD, MPH is Board-Certified in Allergy and Immunology. Dr.Leickly is a Professor of Clinical Pediatrics at James Whitcomb Riley Hospital for Children at Indiana University School of Medicine in Indianapolis, Indiana.
David R. Naimi, DO is Board-Certified in Allergy and Immunology. Dr. Naimi is an Allergist at Northwest Asthma & Allergy Center and is a Clinical Assistant Professor of Pediatrics affiliated with Seattle Children’s Hospital. His practice is based in Everett, Washington.
Harumi Jyonouchi, MD is Board-Certified in Allergy and Immunology. Dr.Jyonouchi is a researcher at The Pediatric Center for Rare and Complex Diseases Division of Allergy/Immunology and Infectious Diseases, Pediatrics UMDNJ-NJMS in Newark, New Jersey.
Scott H. Sicherer, MD is Board-Certified in Allergy and Immunology. Dr.Sicherer is a Professor of Pediatrics Jaffe Food Allergy Institute Mount Sinai School of Medicine New York, New York
Anna Nowak-Wegrzyn, MD is Board-Certified Allergy and Immunology. Dr.Nowak-Wegrzyn is a Professor of Pediatrics at Jaffe Food Allergy Institute, Mount Sinai School of Medicine in New York, New York.
Our Founding Board of Directors:
“The need for support when faced with a chronic illness is essential, especially when it involves a child. Finding accurate information is also an invaluable aspect of proper medical care. We struggled with both of these when our son was first diagnosed. These are struggles that no family should ever face again. We want to make sure that there is a place for everyone affected by FPIES to turn to, so no one is ever alone in this again.” Eric & Rebecca Dyck
“From the moment my son was diagnosed with FPIES, I realized there was very limited medical information and even less support for an FPIES family. I was instantly motivated to make a difference not only for my family, but for every family living with FPIES. My motivation and passion turned into a burning desire to start a non-profit organization which would encompass not only support, advocacy, and research but also measurable results for an FPIES family through interactive support services. I am proud to be a part of not only The FPIES Foundation but also the education, support and advocacy it will provide FPIES families and the medical community for years to come.” Brenda Incarnato
“When our daughter was first diagnosed with FPIES, I distinctly remember feeling very small and very insufficient as a parent. Without any sort of road map, navigating this diagnosis was a daunting task. Thankfully, a good friend walked us through many dark days and nights and with her help, we began to learn how to better manage our daughter’s FPIES. I am honored to be a part of this organization that will be for other families what our friend was for us– a hand reaching out across the kitchen table, offering not only compassion and support, but practical tools and resources to better the lives of our children and families.” Amanda LeFew
“After months of a sick baby girl and no answers I googled, “baby vomits rice.” and found FPIES. But I also found a wonderful group of moms who were supportive and empowering. I quickly learned there wasn’t much of information on FPIES available and even fewer medical professionals who were knowledgeable about it. The need for a central hub for FPIES families to come for information and support became apparent. I am honored to be working with some of those same amazing moms to create The FPIES Foundation.” Melissa Martz
“Before our son’s diagnosis, it took many months to narrow down, and rule out, what was making him sick. Doing the research was empowering, finding other families going through the same experiences was like coming home. I joined an amazing group of families going through similar experiences on support forums and began to see the need for this invaluable shared information to be compiled, and connected, for families just beginning their journey in FPIES. Along this journey, I have met some incredible families; we have connected through shared visions to create this Foundation. I will strive to help this foundation provide reliable medical information for families to connect with a team of doctors to help their FPIES child thrive, improved treatment plans to increase the quality of life for all children affected by this diagnosis, as well as supportive services for families struggling within the stages of this chronic illness. ” Joy Meyer
“I was absolutely honored to have been asked to be a part of this wonderful team to create The FPIES Foundation. We have struggled with our daughter’s care for two years now and it is the passion of the foundation to gather wonderful resources from families, community and the medical profession so that no one will have to go through this unknown journey alone. I will strive to assist with setting up a network to aid newly diagnosed families find FPIES support in their area and to link parents for information sharing and their support.” Kendall Nelson
“The unknown can be crippling for parents, as well medical professionals. We were met repeatedly with ‘we just don’t know’ and ‘there are no studies’. After nearly watching my 18 month old starve to death, I resolved that no parent should experience the pain or fear of navigating FPIES alone. There is hope, there can be healing, and you are not alone.” Nichole Sawatzky
“I’m thrilled to have the opportunity to work with this team to create a central hub for FPIES information. Like most parents, we struggled to find answers after our daughter’s initial reactions. We were afraid to feed her and overwhelmed with worry, doctor appointments and bills. I hope that the work of the FPIES Foundation provides tools which allow parents to spend their time and resources caring for their child instead of fighting for information, resources, diagnosis and support.” Jamie Toussaint
Read more about the history of The FPIES Foundation in an article written by founders Amanda LeFew and Joy Meyer, “Our History: Building a Strong Foundation”
“We get it because we live it”.
Page published: Jun 19, 2012. Updated: Nov.21, 2017 Copyright © 2012, The FPIES Foundation