I am so grateful for the amazing work that the FPIES Foundation is doing for FPIES families! This organization was our saving grace when my son had his first acute reactions to baby rice cereal at almost 6 months old. Our pediatrician at the time could not figure out why my son was experiencing poor weight gain starting at 4 months old followed by profuse vomiting to bile multiple times with in a few weeks. I am even a dietitian experienced at working with patients with IgE food allergies, but my son’s reactions had me completely baffled (we didn’t unfortunately learn about FPIES in college and I had never seen a patient with it). So after days of scouring the internet (and sobbing and praying) for a diagnosis I came across the FPIES Foundation’s website. I reached out to their dietitians and received amazing support and guidance. I finally felt like I had an understanding of what my son was going through. I presented my theory to the pediatrician and although our usual practitioner didn’t think it was possible she did run the idea by her colleagues and one thankfully agreed with the diagnosis. My prayers had been answered as I finally had the information I needed to move forward and help my son! I completed the FPIES Foundation’s continuing education course for dietitians and to this day continue to use all the wonderful resources for parents! I feel like they are truly my family’s partner on our FPIES journey! Thank you FPIES Foundation for being there for our family during some of the hardest days.
The FPIES foundation has been my life line! I appreciate all of the info and education. The support is amazing
The FPIES Foundation continues to be a pillar for families struggling to understand and live with an often misunderstood and difficult to treat FPIES diagnosis. They provide wonderful resources to help navigate the complexities of this rare food allergy, to include everything from literature to share with providers and help caregivers better advocate for children to recipes and tips for managing the day-to-day life with FPIES. They dedicate time to attend medical conferences to raise awareness and help educate providers. They help so many children and families with all they do! We are eternally grateful.
This foundation provides peace of mind to so many people daily. It is such an amazing resource for anyone with fpies questions or concerns.
We are a FPIES Family, we live in a very small rural community, we have zero resources here, Many people have never heard of FPIES. Without your organization we would be lost!!! Your website has provided us with so much useful information, you have truly helped our Family
Without the help of the FPIES Foundation, we would have felt so lost with our boys. A doctor from their medical helped us get an official diagnosis on paper. Their valuable information and support helps us get through each day and year. They also provided us with a community of other FPIES families.
My son was diagnosed at 7 months, 1 year old now, and this page has taught us so much.
The FPIES Foundation was what led us in the right direction so our son could receive a proper diagnosis. Incredibly invaluable information and tools for parents and providers alike. The “find a provider near you” feature helped us locate a new PCP, gastroenterologist, and a dietician experienced with FPIES. and for that we will forever be grateful!
The FPIES organization has parents who work overtime for the organization along with dealing with the tremendous hardships the syndrome causes in their homes. These folks are more than top notch!
My 3 year old has FPIES and this foundation has been such a great great place of information, support and hope!
The FPIES Foundation is a force for good in an entirely new and complex field. The foundation has a plethora of information for families and medical professionals. With the knowledge, guidance, and ideas on the site, my family has found a little piece of mind.
The FPIES foundation has been so helpful on our journey to find information and figure out how to do food trials. I'm so thankful for their help and bringing people together.
My daughter was diagnosed with FPIES (FPIAP) at about 15-16 months old after having symptoms since she was 2 weeks old. This organization has been soo helpful in educating, preparing, and advocating for FPIES kids everywhere!
The FPIES Foundation has given me great support and knowledge as we’ve been along the FPIES journey for 7 years now.
Thank you for your review. We are so glad to be a resource for you on your journey.
The FPIES Foundation has made raising two young boys with FPIES substantially easier. Being able to reach out to other parents via their blog has had a profound effect on my wife and I. We are more than grateful for what they do as well as those that sit on their board.
Thank you so much for letting us know this. We are grateful.
The FPIES Foundation is an excellent source of information, and advocates diligently on behalf of those affected by FPIES. Superb organization.
I had never heard of FPIES, even as a Registered Nurse. When my son got diagnosed at 4 months old, this site helped me tremendously. I have great doctors helping us as well, but you only have a slotted amount of time with them. This site answered so many of my questions and helped me navigate through food trials, as well as sending my child to daycare. I have told my family and my daycare provider about this site because I feel it is so valuable.
The FPIES Foundation has been extremely helpful in getting our daughter the care she needs! Through a little symptom sleuthing I found the foundation and it's wealth of knowledge helped me know to pursue a FPIES diagnosis for my daughter.
When we were given this diagnosis 8 years ago we were very scared of the unknown and felt very alone. The FPIES foundation was our first resource and brought light where there was darkness. This is first place we send anyone to who is in our shoes or who simply wants to learn more. We still actively turn to your resources as we now have 3 children in our home with FPIES. Thank you for being an invaluable resource to help spread awareness, support, inspire and educate!
Thank you for all of the information and resources about FPIES! As a parent of an FPIES kiddo, it’s invaluable!
The FPIES Foundation has been instrumental in helping me understand my child’s conditon. I don’t know where we’d be without them!
I have two children with FPIES and I honestly couldn't have done it without the resources that FPIES Foundation helps provide. I carry their information cards in our emergency bag to hand out to medical professions, who often haven't heard of FPIES before. This is a great group and they have the passion to help many many more families.
My 11 month old was diagnosed with FPIES to avocado at 8 months old. I was directed to the FPIES foundation for information. I have taken their handouts to her daycare to educate all the staff on FPIES as they have not heard of it before.
We recently had our 2nd reaction to sweet potatoes and I had handouts ready for the EMT who arrived and they read through on the way to the hospital. They even took copies to hand out to stations around to gain awareness. Without these resources I wouldn’t be as informed of what to do and look for.
So helpful with information and advocacy for FPIES! Very response and compassionate.
I am writing in support of The FPIES Foundation. It feels these days we are more aware than ever of children who, for whatever reason, are unable to enjoy the full range of food staples when compared to previous generations. One cause of this is FPIES. FPIES is a condition for which research is in the earliest stages. While many families have children with more FPIES triggers than we have to deal with, for each FPIES family, there is a high degree of need for more research and education support. From nutritionists, to daycares leaders, to teachers, education is needed so our children can thrive in a safe environment. The Foundation also can be a hub for allergists, nutritionists, and pediatricians for sharing the most up to date information on FPIES treatment. I encourage you to make yourself aware of FPIES and support The FPIES Foundation.
The FPIES Foundation has been a lifesaver. They have great advice, articles, community involvement opportunities. It gives us parents a place to turn to when we feel lost as this is such a rare disease.
When I was at a complete loss because my daughter was so ill and nothing made sense and the doctors were baffled, The FPIES Foundation was there. Suddenly, everything clicked and I had a direction; a way to protect my daughter. I sobbed. Agonizing sobs that IT had a name, a treatment plan, and others who had been there. And knew how to navigate Healthcare. I finally had an ally.
Excellent resource for families dealing with FPIES. Top notch.
My son, Luke, experienced severe acute to shock FPIES reactions to dairy at 3 and 4 months old, and required hospitalization. It was the most terrifying experience we’ve ever had. Even after this, he was not correctly diagnosed. I found his diagnosis by accident when he was about 6 months old. And thank goodness I did, because I found The FPIES Foundation and was able to learn everything I needed to know to keep him safe. We would not have introduced foods in a way that would have been safe if it hadn’t been for the education of this group. We live in the biggest city in Montana, but we don’t have access to highly specialized care. Luke turned 3 years old last month and we completed the dairy ladder with no reaction! It’s unbelievable and wonderful and we are so relieved. I’m so grateful to The FPIES Foundation for helping me learn how to keep him safe and helping me understand this condition. I’ve learned so much more from this organization than from his doctors. We actually taught his doctors in the last 2.5 years!
My son was 3.5 before we got our official diagnosis. By that time he had already been to the ER in shock 7 times. We had been told for years that it was just a tummy bug it would go away soon. It never did and for 3 years he slowly slide down the growth charts. Finally I hit all wall I researched everything I could online and found Fpies foundation. Then an allergiest with experience treating Fpies and finally we got a diagnosis of 4 Fpies trigger foods. My son is finally on the road to healing and this foundation was the starting block.
My son was diagnosed with FPIES 3.5 years ago. While it was a life altering diagnosis from an allergist who knew little to nothing about FPIES, this organization helped me understand what the diagnosis was, how to handle daily life, and ultimately how to overcome my fear of it. I can safely say we are FPIES free but I couldn’t have survived without their help.
The FPIES Foundation gave me hope at such a difficult time in our lives. I searched everywhere for information and support but had no luck until I found the FPIES Foundation. This is the one place you can go to get accurate information and advice. My son’s allergist provided me with a letter printed from the FPIES Foundation website that I had to bring with us to the hospital if my son reacted and required care. The letter explains FPIES and how to treat it so that medical staff could respond properly. From the Foundation I was able to get advice about our son, as well as read about families who were going through a similar situation as we were. I was also able to find an online support group, which helped me tremendously.
Both my children have FLIES, they offer great tips and updates on new products that are allergy safe and help to promote awareness on this rare allergy!
The FPIES Foundation helped me to find the specialists my son needed.
If it were not for the FPIES Foundation and the information that I was able to find, I do not know if my son would still be here today. Doctors kept telling me that nothing was wrong with my son. I knew something was very wrong. I was able to find a doctor through the FPIES database who was knowledgeable about FPIES and diagnosed my son at a year old. As a result he was finally able to get the help that he needed.
Wonderful foundation that brings hope to those who are living the fpies life.
It all started when I googled "rice and oat baby projectile vomiting." I had no idea what I would find when I typed in those words. No idea what I was dealing with. Ya know who else did not know-the pediatrician.
The top result returned was The FPIES Foundation page. I devoured their website in just a few hours. I returned to my pediatrician's office armed with print offs and requests for referrals. The FPIES foundation gave me the knowledge I needed to k ow what craziness my baby was dealing with and opened the doors to an incredible community.
They have the best information and helpful with where and how to go about slog question
The FPIES Foundation is amazing and have brought so much more light to an issue I knew very little about
My granddaughter had Fpies and the foundation lititure was a real help and comfort to us
This non profit has changed my son and our families life forever. I cannot thank them enough for all of the research and awareness they do for families like ours. #FPIES
The community they have created has been an amazing and supportive resource.
The FPIES foundation has been a blessing to me. I have enjoyed learning from this foundation about healthier options for my baby's unhappy tummy.
Great niece has FPIES.... Organization has helped the family learn to cope and survive in everyday life. Great support system
The FPIES foundation has continued to rise to the challenge of spreading awareness and helping provide resources to families dealing with FPIES. We have relied on the material they produce and provide free to everyone to help educate family, doctors and schools on how to handle our daughter's condition. Without their support, so many families would be lost!
As a parent of a child with FPIES, the FPIES Foundation has been an invaluable resource for our family and others struggling with this confusing and difficult diagnosis. With such a rare condition, many families are left to find information on their own as they try to understand how to manage this form of allergy. The FPIES Foundation has brought together a wonderful combination of support from others going through the same struggles, as well as expertise from the medical field to provide insight as the knowledge and information grows on how to diagnose and treat children with FPIES. They have put together so many resources to help families in one central place. This foundation has also been so instrumental in furthering research on FPIES and spreading awareness to the medical field and the general public. The sooner a child can be diagnosed, the sooner their families can start on the path to healing and finding safe food choices. We are so thankful for the FPIES Foundation and all of their hard work to provide all of the support that they do!
Fantastic Organization. Helping families with FPIES and beyond!
I first discovered The FPIES Foundation through a google search of my sons symptoms. He was 2 years old, failing to thrive, and was constantly in the hospital and doctors offices. He was very sick, and no one could figure out why. Once I found the Foundations website, and learned about FPIES, I was able to help the doctors find the resources that they needed to learn about FPIES, and help my son. Our journey with FPIES has been long, but I am so grateful for the Foundation every step of the way. In April, my son got very ill from a reaction to his only safe food, a formula, and was hospitalized most of the month. Our doctors were able to connect to The FPIES Foundations Medical Advisory Board, and talk to the front runners in FPIES knowledge and research, so that they would best know how to help my son. I will forever grateful to The FPIES Foundation. All of their hard work in research, education, support, and outreach literally saved my sons life. The support system they have created in this world of rare disease is unprecedented, and makes me feel like I am not fighting a losing battle anymore. The board of directors are amazing, and never stop advocating for FPIES, and helping parents learn how to effectively advocate for their children so that they can receive the help and proper care that they need. Through their tireless efforts, I feel confident that FPIES will be better understood, and better known in the medical community and beyond, and that other children will be able to receive proper medical care down the road, and not have to go through what my son had to go through to receive his diagnosis.
The FPIES Foundation was life changing for my family. My husband and I were desperately searching for answers as to what was causing acute to shock reactions in our less than 6 month old baby girl. The moment I read and FPIES on the FPIES Foundation site was the moment we started heading in the right direction to truly change my child's life. I don't know where we would be without them. Certainly far from the healthy 22 month old we have today. We owe everything to the FPIES foundation.
The FPIES Foundation has given me the tools to educate my community. They have given me educational material for my local EMS fire station, emergency room, and coworkers. The more people in the community that are aware the better. At 7 months old my son was rushed to the ER for an fpies reaction and it took 7 months to get a diagnosis. Through the work of the FPIES Foundation I look forward to the day the diagnosis will come sooner for other children.
The FPIES Foundation is an invaluable resource for families trying to navigate the confusing and exhausting world of FPIES.
When my four month old daughter was diagnosed with FPIES, I was overwhelmed and terrified. The FPIES Foundation provided information, how to guides, and stories of other families living with FPIES. I am grateful for all they do for FPIES awareness and the courage they give to families.
My daughter had issues with milk from the very beginning but we constantly got told it was colic. After multiple hospital visits, ct scans, tests, misdiagnoses over a period of 7 years (yes I said 7 years), we finally found an allergist who knew what was wrong. At age 7 my daughter was diagnosed with Acute FPIES to dairy. Our allergist told us to visit the FPIES Foundation for information on how to go about living our life as normally as possible. It was a godsend. Here we are nearly 7 years later and still using their wonderful resources. Thank you for giving me hope.
My 1yr old has FPIES to Rice, sweet potatoes and now egg. Prior to his first reaction, we had never heard of FPIES. This nonprofit proved so much information online and also mailed stuff to us so we could understand what was going on with little Ben.?
The website for this nonprofit is a valuable resource to FPIES caregivers. I use it for research, support, recipes, and more!
Both of my children have FPIES and the Foundation is my go to for helpful info. Recently I needed FPIES info for my daughter's school. The Foundstion's website was easy to print from. I was even able to look up dental info for my son's first dentist appointment.
The FPIES Foundation SAVED us! This was literally the only place we got answers, advice, encouragement, and HOPE! Thank you FPIES Foundation for helping our family thrive!
So helpful since day 1 of my daughters diagnosis! I needed answers, information and education fast and the foundations website did all of that.
So informative and a life saver with the FPIES community.
My son was diagnosed 2.5yrs ago with FPIES.. The foundation/grouo has helped in so many ways. Great people and great information.. I can honestly say I would be lost on this journey without help and advice from other FPIES families..
We found out my son had FPIES just before the first Global FPIES day, and since then you have been such an amazing resource, always keeping us up to date and informed on all things FPIES! Thank you for all you do for our FPIES kiddos and parents alike. We appreciate you!
The FPIES Foundation is amazing! I'm so grateful for someone to be bringing our children's rare condition to light to help bring awareness to the cause. Having a child with FPIES is scary enough on its own and it's even worse if the people around you have no idea what it is or how your child reacts to trigger foods. We are blessed to have such an amazing support group within the The FPIES Foundation!
This non profit plays an incredible role in our lives. Our son has FPIES AND this nonprofit has allowed us to gain knowledge through education, provided materials to others to gain awareness, and also provided a support to us during this difficult season of life. Also, as a dietitian, this nonprofit has provided education to further help my knowledge as a practitioner. I'm so proud that we have this organization to lead us as we find out more about this rare disease.
Being a young family who is only still in the early days of working with an FPIES diagnosed child, we are eternally grateful to the foundation for all their information that helps us day in and day out with dealing with our eight month old sons syndrome. We appreciate everything you do. We are the voice.
I really appreciate the time and effort and passion that this nonprofit takes towards learning more about this mysterious allergy issue. My son has FPIES and it's can feel like a lonely road with so many medical professionals who are uninformed. But this nonprofit is doing all it can to change that.
I had never heard of F-PIES until my daughter started having symptoms. The F-PIES Foundation helped us find a doctor who would listen and other very important information. It is so nice to know that we are not going through this alone!
Thanks for all the information being right there when I need it.
Great for information, support, and advocacy when dealing with FPIES.