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2020 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

135 Stories from Volunteers, Donors & Supporters

2 Trillitye P.

Professional with expertise in this field

Rating: 5

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!!!

3

General Member of the Public

Rating: 5

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..

3 Tina112

Client Served

Rating: 5

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!

4 Samantha88

Client Served

Rating: 5

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!

4

Professional with expertise in this field

Rating: 5

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.

4 Bacall E.

General Member of the Public

Rating: 5

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.

3

Client Served

Rating: 5

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.

2 Donna268

General Member of the Public

Rating: 5

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!

2

General Member of the Public

Rating: 5

Thanks for all the information being right there when I need it.

2

General Member of the Public

Rating: 5

Great for information, support, and advocacy when dealing with FPIES.

2 Andrea132

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

Fabulous organization that has been a wonderful resource for my stepsister's little one. Keep up the good work!

1

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

Our good friends daughter was helped big time by you guys. Thanks so much!!

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.

2 WestCoastFPIES

General Member of the Public

Rating: 5

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.

6

General Member of the Public

Rating: 5

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.

2

Volunteer

Rating: 5

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.

2

Board Member

Rating: 5

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.

1

Board Member

Rating: 5

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

1 Erica32

Volunteer

Rating: 5

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!

1

Board Member

Rating: 5

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!!!

1

General Member of the Public

Rating: 5

Has been a vital role for a friend in dealing with the day to day struggles her family goes through for their son Chase.

General Member of the Public

Rating: 3

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.

1 Jan_33

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

A great source of information and support for families struggling with FPIES.

General Member of the Public

Rating: 5

This organization has been a savior for a special friend and her little man. Thank you!

2

General Member of the Public

Rating: 5

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!

2

Volunteer

Rating: 5

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.