The FPIES Foundation has been instrumental in my family's food allergy journey. Not only have their resources been vital for us, they've helped hundreds of my clients who are breastfeeding through infant food allergies. Recently, one of the founders even took the time to join our Breastfeeding and Food Allergies Master Class Experts Panel. Thank you for all that you do!!!
I had a very hard time when my daughter was having reactions and I didn’t have a diagnosis. I knew in my heart that she had FPIES. The FPIES foundation gave my amazing support during one of the hardest times of my life. I will always recommend the FPIES foundation!
We LOVE the FPIES Foundation! They have been advocating for my son going on 8 years, and so many other boys and girls just like him.
This foundation is a wealth of information and helped me be able to ask the right questions to get an accurate diagnosis.
The FPIES Foundation is an amazing resource for parents with children that are diagnosed with this rare disease. I am a nurse and had no idea FPIES existed until my daughter was diagnosed at 6 months. This foundation helped me understand the disease symptoms and has several resources available for families struggling through their food intolerance journey. I will be forever grateful to the FPIES foundation for helping me find and understand the best medical care for my daughter when she couldn’t speak for herself.
The FPIES foundation has helped me a great deal since my son was diagnosed at 5 months old. I had never heard of FPIES before so I was thankful to have support and information when I needed it from the FPIES foundation.
The FPIES Foundation has been a tremendous help to our family for our little one that was diagnosed with this disease at 9 months old and still at 8 years of age has not outgrown it. She is a hero in our book and through the help of the foundation we find comfort and spread awareness.
This is literally the only life line we have to the research world for FPIES. Many other medical conditions have many many foundations for them, but not FPIES. These guys are awesome in helping get information out to people on what this is, and maybe, just maybe, one day someone can help us get relief from this syndrome with their help!
The FPIES Foundation has been the absolute best resource for our family when our daughter was diagnosed with FPIES. The resources actually even helped with the diagnosis itself! The team is responsive, supportive, and great.
Wonderful organization that truly has FPIES families at heart! The FPIES Foundation provides evidenced - based resources for both patients and healthcare providers. As a parent of a child with FPIES and a dietitian, I am so blessed to have learned so much at the start of my son’s diagnosis from the FPIES Foundation. Without the great work this organization is doing I know myself and many other struggling FPIES families would feel completely alone in managing a high needs child.
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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.
thefpiesfoundation 10/01/2019
Thank you so much for your kind words. We so very much appreciate learning the impact of our work.
When my son got a presumed diagnosis of FPIES, I was terrified, and felt completely alone. The FPIES Foundation has been immensely helpful in dealing with the diagnosis, including the gathering of information about the condition as well as providing a list of doctors experienced with FPIES. I'm so grateful for the FPIES Foundation!
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
Thank You
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.
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.
thefpiesfoundation 10/01/2019
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.
thefpiesfoundation 10/01/2019
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.
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.
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.
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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.
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
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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 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!
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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!
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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!
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!
This foundation helped my cousin tremendously with caring for her daughter. They had such a major impact on their lives. I Highly recommend them to everyone.
Fabulous organization that has been a wonderful resource for my stepsister's little one. Keep up the good work!
I'm so happy that this foundation has helped so many people! My friends daughter has Fpies and she is doing so much better! Thank you to all that have helped raise awareness and helped those struggling!
Thank you for all that you do! My friends little girl was diagnosed with FPIES. It was such a scary journey. Your foundation helped my friends feel that they weren't alone and the education and sense of community were invaluable for her journey. Thank you!
Our little girl's best friend was diagnosed with Fpies and the journey has been a hard one. Your foundation has not only shed light on her day to day struggles, you have helped her get to her normal and and a good place of support. Thank you for all you do!
My Granddaughter was diagnosed with FPIES but it was your site that helped my daughter to figure out what was happening and why when Drs. and others didn't believe her! Thank you for helping her and my Granddaughter!
Amazing organization!! My friend told me about this nonprofit as my daughter has FPIES. So thankful to have this resource!!!
a very special and wonderful organization that has helped my friend and her precious little girl
Out tremendously. Thank U for all U do!!!
Thank you for helping my friend and her beautiful little girl get through a very rough time in their lives. You have them knowledge, and helped them get a diagnosis and now Ady is doing great. As are her Mom and Dad! Thank you!
The education this foundation provides is a miracle for those living with this little recognized condition. Bringing Fpies to the forefront and educating the public is an important role! Thank you so much!
Words can't express the gratitude my family and I have for the FPIES Foundation!!! Without their hard work and research, I would've been lost trying to figure out what was wrong with my baby girl. Thank you for all you do!!!!
So THANKFUL for this nonprofit!! There is not much information out there about FPIES and it was one of three resources I found on the internet at the time of my daughters diagnosis. I am always learning more or feeling part of a community by the information they are able to provide. Appreciate all the hard work everyone involved provides!
My nephew has FPIES. His mother (my sister) is part of this organization. I read on Social media all the time of other FPIES families being eternally grateful for all the help they receive from this organization. From the sounds of it, they wouldn't know what to do or where to even begin without this wonderful organization.
The fpies foundation has been such a great resource for my family. Such great information and a place we can really count on to add more tools to our toolbox! THANK YOU fpies foundation for all your hard work and dedication.
My second child was a sweetheart from birth, but I knew something was wrong. She always screamed out in pain and rarely slept. At 6 months she had a few "episodes" that were dismissed by doctors, family, and friends. From 6-9 months, she rapidly fell to the 3rd percentile for weight and height (she had previously been 95%th).
When I started googling and finally found a site that described what I had been going through, I cried with relief. I had honestly wondered if I had been over-analyzing, making things up, etc. To read this factual information, to hear from other parents, and to have people that understood what I was going through made a world of difference to me and helped my child to the treatment she needed to thrive again.
THANK YOU for these resources from the bottom of my heart!
My son has FPIES and it has been a long and difficult road for us. I truly believe we wouldn't be where we are today if it wasn't for the FPIES foundation; their resources and their support. Not only have them provided us with loads of information and knowledge but they have truly provided a world of support for us. Thank you FPIES Foundation for all you do!
The people who run the FPIES Foundation pour their hearts and souls into helping. They sent me a packet of information and helped me feel like I wasn't crazy when so many people (including doctors) didn't understand what I was explaining to them. Thank you.
After giving my grandson a taste of oatmeal at the age of 4 months he went into a severe reaction. Vomiting until he went into shock. At the ER we were told that he had a case of the flu. Fast forward a few weeks, we again tried the oatmel and Stephen had the same reaction. My daughter knew that this was no ordinary flu that was going on with him. She pour herself into researching his symptoms and came across the FPIES Foundation. When we took him to the hospital we came armed with information about FPIES. The doctors and staff had no clue about FPIES, they did after that visit. Stephen is now 2 1/2 years old and has only a few trigger foods that give him minor reactions. We are so grateful that the FPIES Foundation with all of their valuable resources and termendous support has helped us through this.
What a great non profit that truly supports the families affected by FPIES and the most current research. My children have food allergies, not FPIES, but I have taken some great information from this source. I know a wonderful little with FPIES, please keep up the good work!
My grandson has FPIES and I have seen first-hand the frightening effects of FPIES, espectially for the child who is clueless as to what is happening and why. The FPIES Foundation is a wonderful resourse for both the medical profession and families affected by FPIES.
Both of my boys have food allergies, not FPIES, but we can relate on so many levels! FPIES has a great community and support system that all parents need when dealing with any food related challenges with kids!
Having a child is challenging enough. Having a child with FPIES can be overwhelming. Your infant can't tell you what's wrong and trial and error is excruciating. I had never even heard of the condition until my friend's son was diagnosed with it. The diagnosis, as hard as it was, was a silver lining. Support is critical. The FPIES foundation has been invaluable to my friend and her entire family. It provides emotional and intellectual support, and I have seen first hand how it has buoyed my friend's spirit and resolve. While her family and friends never left her side, the FPIES foundation did for her, her husband and her children what we couldn't, give hope and understanding. Thank you from the bottom of my heart.
My friend's child has FPIES. She and her family have found incredible support from this organization. It is so nice to know that families suffering from this rare condition have an organization like this to help them adjust to their new lifestyle.
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I have a cousin who has FPIES and has seen everything he has gone through. The FPIES Foundation has been a huge resource for him our family.
Both of my girls have FPIES. We spent over a year going from specialist to specialist trying to find answers about my toddler. It was the FPIES foundations website that finally gave me some needed information and the provider locator that helped us find the right specialist to treat her. Now even though our new baby also has FPIES, we are able to see her thrive and enjoy her first year because we knew what it was right away and how to deal with it. We are very thankful for the FPIES Foundation getting information out there about this rare condition so people like us can find answers when nobody seems to have any.
My friend has a child with FPIES.. As someone who has watched her and her child suffer I can honestly say this organization has been life-changing in the most incredible ways. Keep up the amazing work.
As a Child Life Specialist working in Pediatrics The FPIES Foundation has been an amazing resource. It is always difficult finding reputable online educational information to share with patients and their families. I have confidently shared the FPIES Foundation with not only families, but also with other medical professionals. The FPIES Foundation is THE go-to site for the most up-to-date information, practical advice and parental support.
Can't say enough positive things about the FPIES Foundation. They've got a solid mission and are a great resource for those of us who have a child suffering from FPIES. Our son was diagnosed as an infant, more than two years ago, and it's been a long journey. The FPIES Foundation has provided support, education, encouragement and friendship.
Also, I have to disagree with the reviewer who said he didn't know where his donations were going. Whenever there's a fundraiser the foundation makes it very clear to donors in how they plan to use that money... and it's many of the same things he mentioned. It's not easy running a successful volunteer non-profit organization... the Board of Directors and all the volunteers at the FPIES Foundation do a superb job.
Our son was diagnosed with FPIES at 7 months old. We were lost, scared and confused. The FPIES Foundation made our struggle so much less complicated. It was our safety net. I've become a parent volunteer to help the Foundation continue it's mission of support, education and advocacy.
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We would be lost with out The FPIES Foundation! Our son was diagnosed with FPIES at 7 months old and we were scared and overwhelmed. I reached out to a parent volunteer and was immediately given helpful advice and support on where to begin with our son and this crazy GI food allergy syndrome. We cannot thank The FPIES Foundation enough for their advocacy, educational information, materials and support during this difficult time for our family. We now have an excellent medical team for our son and he's making slow but steady progress.
The work this group does is truly life changing. I trust the information they give, rely on the support they provide and love life love the launch of the research registry! Keep up the amazing work. Thanks to the info they gave me I was able to get my son diagnosed a lot sooner than if I didn't have them on my side.
I like everything about this foundation. There are other foundations that tend to have tunnel vision and don't educate the people on the fact that FPIES is very much a spectrum syndrome. Some of the other organizations tend to focus on their own personal experience with FPIES and don't seem to accept that children may exhibit slightly different symptoms. I also like how this foundation is like a family support system. I love that they don't claim to be the FIRST and ONLY foundation because their number one goal is to help spread awareness. They willingly share all information they have and don't charge outrageous fees to learn from educational seminars they hold. I feel completely comfortable donating to this organization and I feel that every penny truly helps the cause. They are a great support system and a wonderful educational organization.
My family first became aware of the FPIES Foundation through our pediatric nutritionist at CHOP.
After many years of misdiagnosis we were happy to have a diagnosis, but were completely overwhelmed with questions we had no answers for. Through the foundation I have learned how to care for my daughter, how to cook for her, how to support her and how to get support for myself. I'm glad to have the opportunity to volunteer for the foundation that helped us through the hard times and even happier to be volunteering with an awesome team of other parents who give so much of their time to help newly diagnosed kids and their families. FPIES is a complex disease that takes up much of a parents time and money, so it is especially touching that the foundation is completely ran by other parent volunteers who give up some of their free time to extend their hand to another family.
Working with The FPIES Foundation has been an incredibly empowering and intense experience--- we hear from families, medical professionals, and members of their communities about the impact our organization and resources have made for them daily. We hear stories from struggling families that make me want to cry alongside them and success stories that make me want to jump for joy with them. Everyday I am reminded why we do the work that we do--- we will always strive to provide that network of caring, providing the support families and medical professionals need to care for the smallest of patients, those children affect by FPIES. Personally and professionally, I have been forever changed by all of these families and professionals that I am so fortunate to be able to serve and by the amazing parents I work with making up this organization.
The FPIES Foundation is a place for support, tools, resources, and empowerment for families and the medical community alike. Everyday we hear from families in how much this information is helping them thrive. The Foundation was started by families with families in mind. We are working to ensure that all parents of children living with FPIES can spend their time caring for their child, instead of struggling for information, diagnosis, resources and support. No family should journey alone
I was referred to the FPIES Foundation nearly one year ago. Both of my children have FPIES ...not just the acute vomit to shock symptoms, but the more "gray area" reactions. Severe intolerance to just about every food protein.
We have been fighting this battle alone for 5 years. Eighteen medical specialists, nutritionists, pediatricians, lactation consultants, etc. have all been stumped by the day to day struggle we endure as a family finding safe ways to nourish our children. Even giving our infants a bath was enough to trigger a reaction. With no understanding and no help, it has been a very isolating road.
Being referred to the FPIES Foundation was a lifesaver for our children. Reading other parent's stories and relating to their journey ...for the first time ever I was not alone! Having the "toolbox" of letters to schools, physicians, medical articles, and guides to day to day survival of FPIES has made a WORLD OF DIFFERENCE. We have finally connected with a medical team to help us navigate this crazy journey of life with older FPIES children. We also have joined the foundation to organize FAMILY MEETUPS ... our journey with FPIES can be so isolating ...it is wonderful to connect with others who truly "get it".
The FPIES Foundation is providing much needed information and awareness of this rare disorder. Knowledge is power, and with the FPIES FOUNDATION ...AWARENESS IS ACTION!
The FPIES Foundation has been extremely helpful in spreading awareness to families and medical providers to help our children with this debilitating syndrome. The literature and tools approved from the Medical Board, have helped us in teaching our sons medical providers and school staff about FPIES. I don't know what I would have done without the help from this foundation to lead the path to better health and wellbeing for my child and our family. Thank YOU!!!
Has been a vital role for a friend in dealing with the day to day struggles her family goes through for their son Chase.
Helpful, but.... The FPIES Foundation has some helpful information that got us started after my daughter was diagnosed with FPIES last year. It really helped my wife to read all the stories of other families struggling with this. They ask for contributions in a lot of different ways and sell merchandise -- I just want to know specifically what it funds other than overhead. They had a big fundraiser last week but never said how much they raised or what particular projects its going to. The other FPIES organization is funding research, conferences, materials that go to all doctors, getting the medical code passed, etc. I hesitated to write this review because I want to put my full support behind this group, but I think people should know exactly how their donations are spent.
We have a grand son with FPIES. This organization has been a blessing to him, Chase, and his family. FPIES is difficult to diagnose and many doctors have not even heard of this health issue. It is severe reaction to almost all foods and there is no way to find out which food will set off a reaction except to try the food and see. This makes life so difficult on both the child and his/her family. The FPIES foundation provides information, support, and inspirational stories which all help the family. Please support this important foundation!
The FPIES Foundation was the best place for me to find information that helped us get our son diagnosed with FPIES. Our first doctor never even heard of it, but after reading parent testimonials we knew what questions to start asking. They also helped guide us through the management of our sons disease while we were waiting for the official word from the doctors. We would have been lost a year ago without the FPIES Foundation. Thank you!
The FPIES Foundation is a fantastic organization. They aim to arm families with unbiased information so as to empower the parents to find the path that best helps their child. FPIES families volunteer their time to run the foundation. And a panel of well respected physicians lend their expertise to ensure information gleaned from the site is based on sound medical ideas.
I feel it is also important to note that the FPIES foundation runs solely on fundraisers and donations; they are not sponsored by any corporate entity. Such sponsorship would easily allow information to be skewed and send business the way of said company rather than give the best information, regardless of it helping/not helping a corporation.
Their goal is to help FPIES families navigate the winding road with this disease and I believe they are doing just that.