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2019 Top-Rated Nonprofit

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

125 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

General Member of the Public

Rating: 5

My friend's little girl has fpies and she was so grateful to find this organization.

1

Client Served

Rating: 5

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!

1

General Member of the Public

Rating: 5

Great support and exposure! Always helpful! Thanks the Fpies Foundation for all that you do!

1

General Member of the Public

Rating: 5

Amazing organization!! My friend told me about this nonprofit as my daughter has FPIES. So thankful to have this resource!!!

1

General Member of the Public

Rating: 5

Amazing organization! This has meant the world to our good friend.

1

General Member of the Public

Rating: 5

My friend's daughter was diagnosed and helped greatly through this organization.

1 Crystal79

General Member of the Public

Rating: 5

What a great organization, you have helped a dear friend of mine and that means the world to me.

1

General Member of the Public

Rating: 5

a very special and wonderful organization that has helped my friend and her precious little girl
Out tremendously. Thank U for all U do!!!

1 Rick63

General Member of the Public

Rating: 5

Helping parents thru some of the darkest days of parenting. You guys did an amazing job

1 Melanie N.

General Member of the Public

Rating: 5

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!

1 Nicole135

General Member of the Public

Rating: 5

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!

1 Vincent A.

Advisor

Rating: 5

Above and beyond the call of duty for my niece. Phenomenal!

1 Rachel155

Client Served

Rating: 5

Your service and education is amazing and did wonders for our family! Thanks

2

General Member of the Public

Rating: 5

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!!!!

2 Tatiana Z.

Client Served

Rating: 5

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!

2

Client Served

Rating: 5

They do AMAZING work that helps families who often feel alone.

2

General Member of the Public

Rating: 5

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.

3

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 5

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!

3

General Member of the Public

Rating: 5

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!

4

Client Served

Rating: 5

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.

2 Stephanie177

Volunteer

Rating: 5

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.

4

Volunteer

Rating: 5

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!

4

General Member of the Public

Rating: 5

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.

4

General Member of the Public

Rating: 5

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!

4 Jaime N.

General Member of the Public

Rating: 5

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.

2 Brian116

General Member of the Public

Rating: 4

Having children with food allergies is very challenging. Thanks for all the good work.

2

General Member of the Public

Rating: 5

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.

Previous Stories
2

General Member of the Public

Rating: 5

A good friend if mine had a child that suffers from this disease. Her family has found this organization to be incredibly helpful.

2 Lisa406

General Member of the Public

Rating: 5

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.

2

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 5

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.

3

General Member of the Public

Rating: 5

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.

2

General Member of the Public

Rating: 5

A great foundation who has supported a wonderful family! Keep up the good work!

2

General Member of the Public

Rating: 5

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.

2 FPIESMommy

Volunteer

Rating: 5

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.

Previous Stories

Client Served

Rating: 5

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.