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International FPIES Association (I-FPIES)

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Nonprofit Overview

Causes: Health

Mission: The International FPIES Association (I-FPIES) is a non-profit organization whose mission is to improve the quality of life for patients and families affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) by means of education, research, advocacy and support. The I-FPIES strives to be a worldwide leader in FPIES awareness and the issues surrounding this condition. We seek to increase awareness by providing educational resources, support services, advocacy, and the development of groundbreaking research through our partnership with the medical community.

Results: -Creation of an official FPIES ICD-10 diagnostic code (K52.21), entirely foundation run and supported by the Centers for Disease Control (CDC) -Collaborative partnerships and recognized as the official FPIES organization with AAAAI, ACAAI, NORD, AAP -Continued funding of new research studies. -Actively developing formal diagnostic and treatment guidelines of FPIES in collaboration with our Medical Advisory Board, AAAAI and an international panel of FPIES experts -Host of the first annual FPIES Education Conference in October, 2013 -Expansion of awareness and education programs. In 2013, I-FPIES educated over 67,000 medical providers, to decrease the amount of time patients are lost without a diagnosis and treatment - An extensive library of resources and educational videos hosted on the foundations interactive website and social media sites -One on one supportive services -Local and region support groups hosted by FPIES-knowledgeable experts and I-FPIES board members -Hosted the first national FPIES walk in Chicago, IL -Tools for the practical management of FPIES available in printable forms, at medical provider offices and on our website -Numerous fundraising programs with detailed reports on how funds are spent -All overhead expenses from 2010-2013 provided by the I-FPIES Executive Board to ensure all donated funds are used immediately and directly to the foundations mission and goals

Target demographics: patients and families affected by Food Protein-Induced Enterocolitis Syndrome (FPIES)

Direct beneficiaries per year: over 100,000 families and supporters.

Geographic areas served: the U.S. and internationally

Programs: education, support, research and advocacy for individuals with Food Protein-Induced Enterocolitis Syndrome (FPIES) and their families. I-FPIES partners with leaders in our medical community to develop evidence-based research with a focus on early detection and new treatment options. The foundation’s research efforts are coupled with our emphasis on education and advocacy to positively impact the lives of patients and families coping with FPIES. Ultimately, the I-FPIES represents families and medical professionals united by a common focus: finding a cause and a cure for FPIES.

Community Stories

32 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

I honestly don't know where we would be without this organization. I can directly attest our recent success with our FPIES daughter to the valuable information we learned at the FPIES conference last year. For a condition that I always considered to be so gray, attending the conferencing and listening to the doctors really made things very black & white for me. I left the conference with a renewed sense of hope and a plan of action. We have recently outgrown FPIES and I couldn't be more appreciative of this organization for their immense support and valuable resources during our journey. Thank you, thank you, a million times thank you!

Lisa270

Board Member

Rating: 5

This foundation helped to give us support in many ways. Initially it was a great resource for medical-based information regarding this rare disease however I soon realized it also offered a huge amount of emotional support too. I was lucky enough to be asked to be part of the organization and now I help offer support and advocacy to many others traveling this FPIES road. I-FPIES has truly been a blessing in our lives.

Previous Stories

Client Served

Rating: 5

Iaffpe has been a wonderful resource since our son was diagnosed with FPIES. The organization is invested and cares about all its families immensely. All resources are readily available & any questions personally answered if help is needed. Iaffpe offers a community like no other. Both my husband & I are in the medical field & feel extremely blessed to be able to utilize, support & be involved with Iaffpe as we continue on our fpies journey.

1

Volunteer

Rating: 5

This organization has been a source of information, strength, and sanity for my family! My nephew has FPIES, as a result my sister and brother in law found themselves in an unknown world where even the best doctors had little helpful advice to offer. Finding other parents and friends who could understand and relate to what they deal with on a daily basis has been incredibly helpful for everyone. With this rare disease, parents are often far more the "experts" than the medical community and having a place to ask questions and receive advice is invaluable. Highly recommend!!!

Donor

Rating: 5

These are the caped crusaders of the FPIES world. I can't believe the difference this organization has made in a few years. When I started this journey 4 years ago there were very few resources for doctors and none geared toward parents. Now this community has the voice of action that it needed. Because of I-FPIES, this condition is finally getting its diagnosis code, guidelines, research, and resources on every aspect of FPIES. I am confident that this organization will solve the puzzle and find the answers that families need so desperately!

General Member of the Public

Rating: 4

I was using this as a resource for one of my friends to learn more about the disease. Lots of excellent, up to date information.

Professional with expertise in this field

Rating: 5

The information offered and the ease of access to reputable references makes I-FPIES an invaluable non-profit.

1

Volunteer

Rating: 5

I have never witnessed a nonprofit do so many wonderful things in a short period of time. This organization is trustworthy, reliable, and loyal to the FPIES community. I am so impressed with their leadership and skills. Their ability to organize doctors, parents, children, and the community at large is amazing!!!! I recommend this resource to anyone who has contact with a FPIES child or adult.

1

Client Served

Rating: 5

When my daughter was diagnosed with FPIES at four weeks old, my husband and I had nowhere to turn to. I-FPIES was the only place where we could educate ourselves and others with the added reassurance that the information we were looking at was legitimate and overseen by medical professionals.

The care packet that they provide took away so much of the anxiety that came with trying to organize our daughters medical history and care instructions for caregivers - I consider it an absolute essential for any parents with FPIES children.

Thank-you so much I-FPIES, the world is a little less lonely for our family in this trying time.

Kay from NZ.

1

Client Served

Rating: 5

My two year old son has FPIES and reacts to 7 foods (dairy, soy, rice, oat, eggs, shellfish, and coconut). There are far fewer resources available for parents who are caring for FPIES children but I-FPIES has them all in one place. They have organized everything in a way that is easy to navigate, even when you haven't slept in days and feel like you don't know which way is up anymore. Their commit to FPIES is amazing. More importantly, they are huge advocates for awareness and research. The most useful things for families is for the medical community to know what FPIES is and how to treat it. They work very hard to spread information about FPIES as well as support research so that more can be learned and understood about this rare disease.

1

Donor

Rating: 5

It’s nice to know that while we’re fighting our FPIES battle at home, I-FPIES is out there trying to make a difference for FPIES kids. It seems like they always have new resources to share, new research from their doctors, or blog posts that just make me feel like I’m not alone in this. We recently made a donation (which was matched by my husband’s company!), and I encourage anyone effected by FPIES to support the great work this organization is doing.

Board Member

Rating: 5

I have a daughter with FPIES who was diagnosed in 2010. I truly felt lost trying to find my way through this diagnosis. I felt very lonely and had very little resources.
Since attending the IAFFPE conference last year I have been overwhelmed by the knowledge and support that this organization can and is willing to supply to our community.
It is truly a turning point for this condition to have an organization that is leading the way and providing such a wonderful and needed resource to parents.

Volunteer

Rating: 5

Great nonprofit doing real work to move the needle and get FPIES noticed as the very real but rare disorder that it is. As a mom of an FPIES child, it's very easy to be consumed with fear of foods and everyday situations involving food, and of course trialing new foods. I appreciate that IAFFPE presents the facts and focuses the support for families on how to live confidently with FPIES rather than live in fear. My only hope going forward is that this wonderful organization can persuade doctors and hospitals to focus their own research dollars on FPIES to understand it better and provide real treatment for families in the future.

Previous Stories

Client Served

Rating: 5

I'm grateful to the work IAFFPE has done to raise awareness and champion funding efforts for FPIES research. My FPIES son is 2 yrs old and can only eat 4 foods. It has been a long and challenging two years. I'm grateful to this organization for garnering the support of the top medical professionals who are passionate about research and finding not only a cure, but also working together to create consensus on how to manage this condition. Parents who have children with FPIES are horribly alone in this journey, so knowing that IAFFPE is working to change that by educating doctors and the public, funding desperately needed research and bringing families together is tremendous.

Kaylee P.

Board Member

Rating: 5

With a daughter currently outgrowing FPIES (yay!), IAFFPE was where I first found the folks in the world who knew my story too! And in a season where things were mostly cloudy and confusing, having access to tools and resources to accompany our journey we're most beneficial. I printed out the PDFS, stuffed them in a manila folder and stashed them in our diaper bag - leaving me with a peace of mind knowing I had everything we - my family, our doctors, or babysitters - needed in case of a reaction! Now, serving alongside a team of individuals who care deeply about FPIES and its effects on every day living - I'm committed to helping others who are just beginning their journey.

1

General Member of the Public

Rating: 5

I have to say that I am beyond impressed by this organization. I just got back from the FPIES Education Conference they hosted and it was an incredible experience. I was floored by all their doing to help families. The conference answered so many of the questions I had. We just got diagnosed FPIES a few months ago and I was overwhelmed by all the info out there--didn't know where to start. I got to spend an entire day learning about FPIES, asking questions, and meeting other parents. I am SO grateful for the opportunity. The moms who run this organization are amazing, selfless women. The doctors are all so driven and compassionate to help our kids (I wish we had doctors like this where I live -- I wanted to pack one in my suitcase to take home!). If I could give 10 stars to IAFFPE, I would -- they are going to change the world for FPIES kiddos.

2 WestCoastFPIES

General Member of the Public

Rating: 3

The IAFFPE is really good at getting noticed but I find them slightly dismissive of families that don't fit their preconceived notion of what "FPIES" is. FPIES is a very rare allergy affecting babies who can't speak for themselves. It is tough to get doctor's to help and for a child who suffers chronic versus acute fpies, diagnosis can be a long time coming. I reached out to the IAFFPE for help and they got right back to me, which was awesome. But, when my child didn't exhibit symptoms like their kids did I wasn't given much guidance. It's not that they dismissed my concerns, but rather that it seemed helping my kid didn't further their own agenda. I also feel like they do an awful lot of self congratulating and if you are not part of the CHOP (children's hospital of pennsylvania) community then you're not part of the "in-crowd." too political for my taste which is too bad, because they do a good job of at least gettting people to talk about FPIES.

General Member of the Public

Rating: 5

As grandparents of 2 boys with FPIES, we have seen how difficult it has been for our daughter and son in law to deal with a condition about which so little is known. IAFFPE has been a significant resouce in providing information, support and hope to our family and many others.

General Member of the Public

Rating: 5

The IAFFPE has been an amazing source of FPIES knowledge and help for our family. Our son was diagnosed with FPIES in July 2013 at the age of 2. It was because of the IAFFPE that we were able to find a doctor who was knowledgeable in diagnosing and treating our son. Their efforts to support not only the patient but also the parents is so wonderful! We would be lost without the ER letter, web videos, and other resourceful information. It is so difficult to explain FPIES to our local doctors, friends, and family at times. The IAFFPE is a safe, reliable, and accurate beacon of hope for us to turn to... Thank you Fallon Schultz and all other members of the IAFFPE for all your hard work and dedication to the FPIES families across the US and worldwide!

Tricia21

Board Member

Rating: 5

When I was first asked to be a board member for IAFFPE there was not much that I knew about FPIES. I was asked to join by my good friend Fallon because she felt my degree in Public Health would be beneficial to both the board and the organization. For me personally being on this board for the past year has been such a fulfilling and rewarding experience in my life. IAFFPE has taught me so much about FPIES. I have seen first hand what these families truly struggle with on a daily basis. I have seen the joy from the families over getting more exposure about FPIES in magazines and television shows. I have also seen the joy and satisfaction of getting a ICD Code and the significance it has on the families and parents who are working hard to get this disease recognized. This has been an amazing experience for me and I cannot wait to see what IAFFPE does next.

Megan53

Client Served

Rating: 5

I knew nothing about FPIES before I found the IAFFPE website one night when I was searching the internet for answers to my daughter's symptoms. If it weren't for IAFFPE, I would not have known what was wrong with my daughter and then to contact Children's Hospital of Philadelphia! Wonderful organization that I am proud to support!

Professional with expertise in this field

Rating: 5

IAFFPE has done amazing work in the field. It represents the true national and international leader in the field. IT has promoted awareness and education. Many providers use this organization as to the go place for information.