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The FPIES Foundation

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Nonprofit Overview

Causes: Health

Mission: The FPIES Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.

Results: In our first year, we applied for and received our official 501(c)(3) tax-exempt status from the IRS, allowing us to further expand our programs and services for the FPIES community at large. We have created an interactive website. It is packed with FPIES resources for medical professionals and families alike, once more supporting our mission of FPIES education and awareness. Our database of FPIES-friendly medical professionals is a keystone to our web offerings. We have partnered with our esteemed Medical Advisory Board to create an in-depth Q&A. This document provides medically responsible answers to questions asked by the FPIES community.

Target demographics: Families and their children affected by FPIES, medical professionals that serve those diagnosed with FPIES

Geographic areas served: Worldwide

Programs: A Toolbox for families including Food journals, ER Care, symptom checker, doctor visits, label reading tutorial,… Cooking and Nutrition website pages for tips, tools, and resources Provider Directory to find family-recommended knowledgeable FPIES practitioners Medical Journal Article links and glossary Printable education materials FPIES Q&A: Questions from the FPIES community, Answers from the Medical Advisory Board Food Allergy Fair participation Inspiring Family story share program Resource lists Partnering organizations Foundation Social Media for awareness and support: Facebook page/Twitter/Pinterest Foundation Blog/ The Foundation YouTube channel How to Help an FPIES family today article Hugs for Hero’s and other volunteer programs Ongoing Fundraising and Awareness programs Easily accessible website and support forum Multidisciplinary Medical Advisory Board, leaders in FPIES treatment and management 1023 submission and 501c3 non-profit designation

Community Stories

116 Stories from Volunteers, Donors & Supporters

1

Client Served

Rating: 5

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.

Comments ( 1 )

thefpiesfoundation Thank you so much for your kind words. We so very much appreciate learning the impact of our work.

1 Jamie M.5

Client Served

Rating: 5

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.

1 Christine M.7

Client Served

Rating: 5

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.

1 Lisa M.17

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

The FPIES Foundation has given me great support and knowledge as we’ve been along the FPIES journey for 7 years now.

Comments ( 1 )

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thefpiesfoundation 10/01/2019

Thank you for your review. We are so glad to be a resource for you on your journey.

1

Client Served

Rating: 5

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.

Comments ( 1 )

profile

thefpiesfoundation 10/01/2019

Thank you so much for letting us know this. We are grateful.

1

General Member of the Public

Rating: 5

The FPIES Foundation is an excellent source of information, and advocates diligently on behalf of those affected by FPIES. Superb organization.

1

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

1 Melanie L.1

Client Served

Rating: 5

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!

1 Aly B.1

General Member of the Public

Rating: 5

Thank you for all of the information and resources about FPIES! As a parent of an FPIES kiddo, it’s invaluable!

1

General Member of the Public

Rating: 5

The FPIES Foundation has been instrumental in helping me understand my child’s conditon. I don’t know where we’d be without them!

1 Brittany62

Client Served

Rating: 5

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.

1 Kimberly R.4

General Member of the Public

Rating: 5

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.

1

Client Served

Rating: 5

So helpful with information and advocacy for FPIES! Very response and compassionate.

1 Dan A.6

General Member of the Public

Rating: 5

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.

1 Janette A.

General Member of the Public

Rating: 5

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.

1 Tamara J.2

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

Excellent resource for families dealing with FPIES. Top notch.

1

Client Served

Rating: 5

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!