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!
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.