Monday, December 9, 2013

A Year of Gratitude

The programs of The FPIES Foundation are centered on the child living with Food Protein Induced Enterocolitis Syndrome. Our programs and initiatives are maintained on a lean budget, minimizing spending while maximizing returns for families. We operate with generous donations of time and talents, all staff- volunteers, advisors and executive are unpaid volunteers.   We are a non-profit, an organization in the business of spreading FPIES awareness, education, and support to families and the medical community alike.

We would like to take a moment to recognize some of the monetary donations and fundraisers we have received this year:  

  • A donation received from a family, in lieu of presents for their son’s birthday, in honor of their son Shawn, who is living with FPIES.

  • A Custom Ink Booster sales t-shirt fundraiser organized by a mom of a child with FPIES, Crystal Lentz with her design: “FPIES, Rare but Real”.  The t-shirt was an inspired idea for a FARE walk, to raise awareness to FPIES.   Crystal organized two successful sales of these bright and quality t-shirts (watch for round 3 in the New Year!).

  • A Norwex Fundraiser, with the profits from Erica Allen’s commission donated to The FPIES Foundation.  Erica raised funds while spreading awareness in her community and online, of what FPIES looks like and how it affects families today.

  • “Chase-ing FPIES” Fundraiser, hosted by Victoria Warren with a percentage of the sales of Ava Anderson products donated to The FPIES Foundation.

  • Bon-Ton booklets sold by Amanda LeFew and Jenn Booth in their communities to raise funds for The FPIES Foundation while helping others save money at Bon-Ton Retailers (watch for this again this spring!).
  • Thank you to our anonymous donors who have graciously gifted The Foundation. 

  • Fundraiser through Cafe Press of FPIES Wordle T-shirts, with designs from FPIES mom Vicki Garding.  Contributions from sales continue to provide donations in this ongoing fundraiser. 

  • And, of course, all of you who contribute by taking part in our other ongoing Foundation fundraisers on Café Press, iGive, Flower Power,  GoodSearch,  Label Your Stuff, Planet Green, Text To Donate and various other online fundraisers you have helped by sharing your participation, we thank you.

The FPIES Foundation is an incorporated, 501(c)3 non-profit foundation dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.   To learn more about our donations, please visit our Donate page.  In addition, be sure to stay posted for bi-annual updates regarding The FPIES Foundation’s spending trends and how your support is directly impacting the face of FPIES awareness, education and research.

This post was written by the Executive Board of The FPIES Foundation 

Sunday, November 24, 2013

FPIES: A Diagnosis, not a Definition

FPIES: A Diagnosis, not a Definition
Nichole L. Huff, Ph.D., CFLE

As Thanksgiving Day draws near, Facebook and other social media outlets are abuzz with people sharing blessings in their lives.  For things both big and small, people are talking about thankfulness.  For parents of children with FPIES, however, the anticipation of Thanksgiving may conjure up more fear than gratitude.  The #1 worry?  Protecting your child from an endless array of food prepared with unknown ingredients.  (And subsequent fears, such as being around people who may not understand why they can’t give your child “just one bite” of pumpkin pie or green bean casserole.) 

Whether it’s Thanksgiving Day—or any other day of the year—for parents of children with FPIES, it’s hard to stop worrying.  Which is why it’s all the more important that we, too, stop to regularly reflect on our blessings.

The Importance of Thankfulness

Research shows that being thankful is crucial for one’s mental health.  One study[1] examining how gratitude affects emotional well-being found that those who frequently “counted their blessings” were less likely to suffer from depression and were more likely to exercise, help others, and achieve personal goals.  The participants who regularly wrote down their blessings also exhibited more energy and were more optimistic than those who didn’t specifically reflect on being grateful.

This study is just one of many supporting the positive effects of thankfulness.  Because FPIES, however, defines so much of what we do each day, as an “FPIES parent” it can be difficult to remember that FPIES is a diagnosis, not a definition—for you or your child.  Depending on your child’s age, triggers, and stage of allergy management, it can be easy for you to count your blessings in “allergy speak” (e.g., successful food trials, severity of food fails, etc.).  But like other parents who manage a child’s around-the-clock condition, our constant focus on all-things-FPIES makes us more susceptible to conditions such as depression and anxiety.

Gratitude and FPIES

As an FPIES community, let’s use the upcoming Thanksgiving holiday to remind us to count our blessings.  Our non-FPIES-related blessings.  So I ask you, what are you thankful for today?  Big or small.  I’ll start…

Today I’m thankful for a quiet house and the warm sunlight shining on my face as I write this blog entry.  I’m thankful for the teachers who are caring for my kids while I work.  I’m thankful for my family’s sweet back-and-forth text messages now commenting on a recording of my four-year-old practicing “Jingle Bell Rock” for his upcoming holiday performance.  And I’m thankful for the earworm that’s now stuck in my head!  Because it reminds me of the little boy singing it—a little boy whom I love with every ounce of my being.

[1] Emmons, R. A., & McCullough, M. E. (2003). Counting blessings versus burdens: An experimental investigation of gratitude and subjective well-being in daily life. Journal of Personality and Social Psychology, 84(2), 377–389. doi: 10.1037/0022-3514.84.2.377

Nichole Langley Huff is an assistant professor and Extension Specialist at North Carolina State University. Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator with the National Council on Family Relations. Her areas of research include child development, parent-child communication, and bio-psycho-social health. Dr. Huff also has a weekly parenting blog at

Wednesday, November 20, 2013

Your voice: Be a part of the first FPIES Global Registry!

Your voice: Be a part of the first FPIES Global Registry! 
A message from Joy Meyer, Co-Director of The FPIES Foundation 

You are more accustomed to hearing from The Foundation as a whole rather than me as an individual voice.  I am the Co-Director of The FPIES Foundation.  I am one of the moms who founded this Foundation inspired from this incredible online community of families affected by FPIES. It didn't take long after I joined the online support groups (just weeks before my own son was diagnosed with FPIES, in the spring of 2010) for me to see the dire need for these voices to be heard, to be collected in a reliable, medically responsible ‘home’.   The voices offering resources, sharing tools, providing support, and empowerment to one another. And, most importantly, the voice of our children, and what having this allergy meant to their development, to their ‘relationship with food’, their quality of life living everyday with a rare and often misunderstood diagnosis.

Being in the medical field myself, I not only saw that the child’s voices needed to be heard but that the voices from ‘other side of the door’ as well; the voices of the very medical providers caring for our children.   To help their patients, practitioners want to provide the best care but not knowing enough about FPIES or where to turn to learn more about this little known allergy, can be as frustrating for a provider as the families living with it looking for answers to best treatments and management.   

We saw the necessity to build a strong foundation for these voices to be heard.  We knew we would not only need a non-profit foundation with a medical advisory board of health professionals compassionate and knowledgeable in FPIES to provide medical advisement, we would need the voices of the families to be strong, to be collaborative in the research and best practice guidelines of this often misunderstood diagnosis.   We recognize the importance of bringing awareness to the diagnosis while building a growing, solid, foundation of resources, tools and support for living with FPIES today; all while working towards the novel, and continued, research that we know this diagnosis that still perplexes many, needs.  

We also know that for recommendations to be built on evidence-based medicine (medicine that looks at several studies and repeated research before drawing conclusions for recommendations and protocols), it will be necessary for good quality research to be presented by several researchers of various facilities. This will help to assure that the widest range of symptoms are addressed and the best evidence-based recommendations can be developed for improved management of this allergic syndrome in the future.

From our inception, we established an ongoing relationship with REGID (Registry for Eosinophilic GastroIntestinal Disorders) to further educate ourselves on the requirements of a registry for FPIES.  Recently, through our Foundation Alliance with Global Genes, we have been introduced to the importance of our collective voices to the rare diseases community, globally, in the National Institutes of Health Global Rare Disease Registry.  We are excited to introduce FPIES to be among those collective voices for rare disorders. 

Your voice, the voice of your children and your family, will facilitate the evidence gathering that is a vital piece to research.  Several families have expressed my same thoughts over the years, “…if only a researcher could read some of what families share, and the patterns parents see on the support group pages…”  We have always recognized that a vital place for evidence gathering begins in the community, from the families living with this diagnosis.

So, how do we connect families with researchers?  How do we help providers help families?   How do we get the voices of all the various concerns, multiple symptoms, and daily struggles from the support groups to the researchers?   A patient registry! In partnership with Patient Crossroads CONNECT program, a program from the National Institutes of Health Global Rare Disease Registry we are honored to release our latest initiative: The FPIES Foundation Global Patient Registry.

I am just one voice in this community--- your collective voices ARE the Foundation. Each voice-- your voice!!-- is crucial for FPIES studies today, to guide new research for tomorrow. The symptoms and unanswered questions of our children's experiences with FPIES will be heard, recognized and researched further to develop protocols for future treatments and new developments in management and care of our children today. It all starts with ONE-- take a moment and add your child's voice.

Connect to FPIES Global Registry 
Registered families receive notifications when new surveys are posted. 

For more news on the FPIES Foundation Global Registry, see our press release: FPIES News & Events. 

The FPIES Global Patient Registry

  • This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
  • For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us:
This post was written by the Executive Board of The FPIES Foundation 

Tuesday, November 19, 2013

FPIES Awareness cards!

With the help of this caring community of families living with Food Protein Induced Enterocolitis Syndrome, we have developed a set of new awareness cards for families living with FPIES, inspired by families.

The business card-sized awareness cards are great for providing simple explanations of FPIES for friends, family, babysitters and so forth. Keep them in your wallet, car, or taped to the fridge to promote awareness and understanding where needed!

This postcard-size FPIES awareness card is great for keeping in the diaper bag or a purse. It not only provides information in plain language about FPIES and how to identify a reaction, but also gives tips on ways others can help to keep children affected by FPIES safe. This is great to share at playgroups, with family or with caregivers!

Along with these newly developed cards, we continue to have the FPIES Awareness rack card, a great at-a-glance explanation about FPIES.   These and more printer-friendly awareness materials are available for downloading and printing (or save the photo and share it in your social media- Facebook, Twitter, Pinterest and more!) from our Raise Awareness page of the website.

We welcome requests or materials via e-mail or postal mail.  Simply contact us at: and we will be happy to send you an awareness packet! 

This post was written by the Executive Board of The FPIES Foundation 

Tuesday, October 15, 2013

Allergy Friendly Halloween!

October brings Fall, Harvest Activities and Halloween!

We have compiled a list of  idea's some parents of children living with FPIES like to celebrate a safe and allergy friendly Halloween.

  • Pre-assembled treat bags! Make your own treat bags (safe candy or non-food treats) and pass out these pre-assembled treat bags to your neighbors ahead of time.   When your little trick-or-treater shows up, they'll get their special, safe, treat!

  • Non-food treats!   Go to Mommies of Miracles Trick or Treat page and help start a new trend in your neighborhood and encourage neighbors and friends to pass out non-food items (along with or instead of candy) to trick-or-treater's!  Mommies of Miracles has these great suggestions to make Halloween fun available to ALL kids: complete with a decal to print, a map to find participating neighborhoods and non-food treat idea's.

  • Stay home and participate! Dress up and hand out non-candy prizes!  If your little one is too little to trick-or-treat, staying home to greet trick-or-treaters can be a fun way to participate in the traditions!

  • Donate! Trick-or-treat and donate the candy to dentist to send to the troops, such as through Operation Buy Back.

  • Candy Trade! Explain beforehand to your trick-or-treater that they will have the chance to trade, or 'sell' their candy collected to you for a "prize" (something special they enjoy). 

This post was written by the Executive Board of The FPIES Foundation 

Monday, October 7, 2013

A Roaring Good Time! FPIES Families meet at Boston's Franklin Park Zoo.

Families living with FPIES were offered a rare treat in Boston, the chance to meet each other face to face and ask Allergy experts questions about the latest research and treatments available!
Boston Children's Hospital Hosted the event on Saturday, September 28, 2013.   It was free to any family with a child suffering from food allergies.   More than 300 families registered for the event and rare allergies such as FPIES and EOE were highlighted alongside the more common IgE-mediated allergies.

The FPIES Foundation table was a busy and popular meeting spot! The Foundation is thrilled at the response and enthused at how many families stopped by to say hello and introduce their little ones. It is also rewarding that many people from the food allergy community who never heard of FPIES before stopped by our informational table to learn more.  Amanda Lefew, Co-Director of The FPIES Foundation, was on hand to distribute informational packets with Label Reading Tutorial, Baking and Substitutions list, and flyer's...all available for reference and print out on the Resources page of the website.

We also loved learning from some of these other organizations like "No Biggie Bunch" and "Allergy Home" and encourage you to also check them out!
Medical Professionals from Boston Children's Hospital Food Allergy program spoke throughout the day.   Dr.John Lee and Tara McCarthy MS,RD,LDN of The Foundation's Medical Advisory Board hosted talks and answered questions. 
The best part of the day was the pure joy on the children's faces.  One mother told us her 3yr.old didn't believe other children had FPIES and that is why she wanted to bring him out.  Many families ended their day together on the zoo's playground, enjoying chatting and watching their children play and run around.  A moment where kids were just kids, and families realized they are not alone.

This article is written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.

Tuesday, October 1, 2013

Find FPIES Support on the Foundation Forum

Any time someone has a chronic health condition, they are usually encouraged to join a support group. Such groups have a reputation for encouragement, empowerment, and education, and those things are vital to the survival of a major health concern.

FPIES is no different. Living with FPIES can be confusing, overwhelming, and isolating. A support group can really help alleviate the pain of suffering FPIES alone.

With FPIES, though, it’s very difficult to find a local support group. It can be a challenge for many FPIES families to find a geographically accessible doctor that understands this disease; harder still is discovering someone else in your area to meet up with who knows about or suffers from FPIES.

Meeting with a traditional allergy group can sometimes work, but because FPIES and traditional IgE-mediated allergies operate so differently, such a group will not fully meet the needs of an FPIES family.

Because of this, many FPIES families turn to the internet for support. There are some very active and amazing groups on Facebook and BabyCenter that provide many of the comforts of an in-person support group, but did you know that the FPIES Foundation has a Support Forum that provides the same?

Many people choose not to participate in social media, and for an FPIES family that eschews Facebook and other social media outlets, finding support can be tricky. We would encourage those families especially, and all FPIES families in general, to visit our Support Forum for help, questions, and encouragement.

There are many active participants on the Forum, and FPIES Foundation Volunteers check in frequently to address any questions that need more detailed answers.

There’s no need to walk the FPIES walk alone! Find the help you need at the FPIES Foundation Support Forum.

Tuesday, September 24, 2013

Living with FPIES: Advocating for Your Child in School and Childcare Settings

Living with FPIES: Advocating for Your Child in School and Childcare Settings
Nichole L. Huff, Ph.D., CFLE

As a mom of a child with FPIES, one of the hardest decisions I ever made was entrusting someone else to care for my son, living with FPIES, for the first time. And, truthfully, for the second time and the third time… and every time that’s followed since. Because every time someone new cares for my son, I have to explain FPIES and everything it entails—the most important of which is what can happen if he’s exposed to a trigger. It’s a bit much to squeeze onto the “Known Allergies” line of standard childcare paperwork.

Needless to say, initially it was just easier to avoid outside childcare. If an FPIES reaction was going to happen, it was going to happen on my clock. Although this approach worked for a while, my “live-life-in-a-bubble” system wasn’t a practical, long-term solution for our family. We had to learn to manage FPIES, and as a dual-income family, this meant learning to advocate for our son in childcare and school settings.

I feel blessed to say that for over three years now, we’ve successfully navigated a full gamut of childcare options (ranging from family members, to babysitters, to Mother’s Morning Out, to church nurseries, to fulltime daycare, to fulltime preschool). Slowly I let go of my fear-driven need for control, and I began to trust others. Instead of being my son’s bodyguard, I learned to be his advocate.

Over the last three years, I’ve followed a few simple F.P.I.E.S. steps when advocating for my child in school and childcare settings:

1. Focus.

When communicating with childcare providers or educators, focus on the facts. The fact is: my child’s safety depends, in part, on the attention given to his food allergy. Every snack, lunch, sippy cup, birthday treat, holiday candy, or crumb on the floor must be monitored. Every time my son eats or drinks something that I didn’t provide, the nutritional label must be read. Text, call, or email me anytime there’s a question as to whether or not a food (or ingredient) is safe. My son’s caregivers must be focused on keeping my son safe too.

2. Plan.

You can never be over-prepared when your child has a food allergy. Always plan ahead. At home, I have any unsafe foods clearly labeled. I have a “safe shelf” where my sitters or son can easily identify quick snacks or meals. I pack a healthy, safe lunch and plenty of snack options each day for my son to take to school. (And in years past when my son ate school-provided meals or snacks, I coordinated with the school to ensure that they knew how to read food labels and identify FPIES-safe foods).  

3. Inform.

When childcare providers or educators initially learn of your child’s FPIES, don’t be alarmed if they’re a little nervous. After all, you’re entrusting them with a lot. Help them learn to take the necessary precautions without treating your child differently. To me, it’s important to inform my son’s teachers that he’s just a normal kid who learns the same, plays the same, and loves the same as everyone else. His diet is restricted, but he isn’t. In our case, he’s just a rough-and-tumble, happy, sweet, smart little boy who can’t have milk proteins.

4. Educate.

Educating yourself on FPIES isn’t enough. You have to share what you know to others. Educate those who teach or care for your child on the essentials of allergy safety. In the case of FPIES, most reactions are delayed, and many need to be treated with fluid or IV resuscitation. With the help of your child’s physician (or using resources like those available at, create an action plan. Also, most people don’t know how to read a food label for allergens. Educating others on basic allergy awareness is a simple yet effective way to minimize your child’s risk of accidental ingestion. As my son has grown, I’ve also educated him on his allergy and taught him to question the safety of new foods when they’re introduced.

5. Support.

Anyone who cares for my son has my number on speed-dial. I ardently convey that I am available at any time, for any question, big or small. In order to build a thriving, trusting relationship with childcare providers or educators, it’s important that I fully support them in their efforts to care for my son. I ask what I can do to more easily facilitate the management of his FPIES. Sometimes this means providing all of my son’s foods, other times it means visiting the school’s stock room to read food labels. I volunteer to provide safe foods for class parties and I’ve written blurbs for the parent newsletter bringing awareness to my son’s FPIES and offering suggestions for safe treats. By fostering communication between teachers, administrators, and other parents, I help to support the network of people who keep my son safe while I’m away.

Nichole Langley Huff is an assistant professor and Extension Specialist at North Carolina State University. Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator with the National Council on Family Relations. Her areas of research include child development, parent-child communication, and bio-psycho-social health. Dr. Huff also has a weekly parenting blog at

Friday, August 30, 2013

Our History: Building a Strong Foundation

Our Families Beginnings:

Joy’s family:
Our son, Samuel, was sick for months before we knew his symptoms had a name.  Food Protein Induced Enterocolitis Syndrome is what the allergist confirmed after months of trying to pinpoint it on our own, with just the Pediatrician and Dietitian help.  We had been brushed off by several specialists in the hospital we were at and continued to be so even after receiving the diagnosis. FPIES, for short, is a delayed severe food allergy of the gut.  Reactions are delayed and can occur hours after eating, and in Samuel, and several others who experience chronic FPIES, reactions can be delayed days after introducing a new food, making it especially difficult to pinpoint.
Imagine my surprise when just before our son’s confirmed diagnosis, I joined a large online support group for FPIES and his same, bizarre, delayed symptoms were echoed in these ‘rooms’ – as if these mothers were standing there in my living room, and not spread across the country in these virtual rooms.  From unknowns in isolation we achieved understanding in empathy of other affected families.  Just as important as the support given and received were the tools shared.  These tools were pieces of several resources that moms were finding on their own, and coming together to share. The information shared here was very valuable- to each new parent, even to the veteran parents, learning new things daily about this little known allergy.

Amanda’s family
We started our journey with FPIES after the birth of our first daughter, Bridget, and still continue on this road, now with our younger daughter Caitlin, who also shares this diagnosis. When Bridget was an infant, we were very alone, living overseas and lacking medical support for a diagnosis we were attempting to newly navigate. Over the years, we learned to seek out the support she needed and how to cope with the day-to-day challenges that accompany this condition. When Caitlin was born, we were able to put everything we had learned to good use. Both of the girls react to multiple foods and eat very restricted diets-- FPIES is a very present part of our daily lives.
As a parent, I felt and still feel a strong need to connect with other families experiencing similar situations as ours. Every day, I hope that sharing our experiences and offering what we have learned along the way can help make some other family's lives a bit easier. I feel honored to be a part of The FPIES Foundation to help enable change for other affected children and their families.

Meeting on an FPIES Support Board:
Amanda shares:                                
When we first suspected that Bridget had FPIES and shortly following her diagnosis, I was hesitant to join the online communities for support. It seems funny now, looking back, but at the time I think I hesitated because somehow, joining would make all that we had been dealing with that much more real. For some time before joining them, I followed the groups on a large social support forum that had a special group for families of children diagnosed with FPIES.
One day shortly before my daughter's first birthday, I decided to start posting on the forum and honestly, I wish I would have joined these groups much sooner. I no longer felt so alone. There were parents, other families, who saw the same things happen to their children that I saw happen to mine. They were strong, positive, and empowered by reaching out to help other families, such as mine. What I discovered was an incredible group of parents, working hard to help their children have brighter days. Many of these parents were doing this with little to no medical or social support. All of the parents were happy to share information about how they approached food trials, where to find medical journal articles about FPIES, how to use baking substitutions, and so forth.
The parents there often commented how nice it would be to have all of this information centralized, so that new parents joining the community could easily access the tools that existed-- both the credible medical information and the day-to-day parent and family resources. By late spring of 2010, I started having these discussions about creating a place for this information with a now very close friend--- Joy Meyer, one of the founding families of The FPIES Foundation and current executive director. The seeds for the Foundation were planted!

Recognizing the Need:
Joy shares:
It was clear that, aside from the need for more and updated research, there was something large missing for FPIES:  a centralized location for all of this information to be housed. A location for medically responsible and reliable information was imperative; one that families could trust and that a medical provider could reference and learn from, as well. The unique understanding a parent has for FPIES as they watch it unfold before their eyes is with must be recognized -- each new trial, each accidental ingestion, each reaction, each food ‘pass’! 
At the time that I joined that, now large, support forum- I was member #69.  It quickly doubled in size as the months passed.  It seemed that although FPIES was rare, the amount of families joining was increasing quickly with no known reasons why.  With no diagnostic tools for doctors to diagnosis FPIES and with limited research, what happens to the families who don’t find this support forum?  Those who aren’t online or who don’t have FPIES knowledgeable medical providers? It took months for me to find the right doctor knowledgeable in FPIES to recognize the chronic case in my son, months of him being sick; all the throwing up, diarrhea, sleeplessness, screaming in pain, and losing weight.  What if it took even longer? What would families do to keep their children thriving when certain foods that they are feeding them, that are meant to nourish, are acting as toxins in their body?

Connecting with Families:
At the beginning of our children’s diagnosis, we both began a blog- a journaling of our struggles and successes, a sharing of recipes and tools. Having learned how empowering shared experiences were, we wanted to give back.  Families connected with us and soon, we both were meeting several other families- through our blogs, families on this large support forum and others.  These families, who were strong advocates for their children as well, wanted to reach out as well. They had interest in connecting the dots for future families, as well as providing resources and supportive services for today’s families. These were families that wanted to establish a non-profit foundation for FPIES.  This foundation would be a home for all these tools and resources, shared from families and the medical community, collaborating for the health of each child.

The Founding Period:
The founding board was comprised of these eight original families, spread as wide across this country as we have children spread across the spectrum of this allergic syndrome.  We knew it was vital to the foundation to have the insights from collaboration of voices.  These voices of professionalism, coupled with their diverse talents, would create the cornerstones of The Foundation for FPIES. Alongside our founding board, we invited esteemed medical advisors comprised of experts in the field of food allergy and FPIES diagnosis and management. We have always been very committed to providing a medically credible and reliable resource for this rare, oftentimes isolating diagnosis. 

Uniting and Nurturing the Voice:
Parents can be their children's best advocates.  We feel it is part of our responsibility as a Foundation to help support parents in this role. After our founding, we knew reaching out and helping families to discover their voices was essential. For the next step in our Foundation's development, we introduced family-friendly tools and resources addressing every step of living with an FPIES diagnosis. These include but are not limited to: a medical practitioner locator, an expansive and thorough question/answer section, and printable resources for awareness, daily living, and emergency situations. Living with a rare disorder can be extremely isolating-- we also provide tools for families to build support groups, to create new support systems.  
We have not forgotten the medical professionals that support our community. With an esteemed medical advisory board, we have developed tools for practitioners to better educate themselves about FPIES and to learn ways to connect with the families they serve. With the growing multidisciplinary additions to our medical advisory board and a panel of volunteer parent advisors, we continue to put a name and a voice to FPIES, empowering families to be strong advocates for their children, as well as empowering the medical professionals who care for our children living with FPIES to share resources and tools to make the everyday lives of FPIES children and their families easier.
The Road to Empowerment:
Today, we continue forging the road to empowerment for families and the medical professionals that support them. By following this path, FPIES awareness, education and research all remain at the forefront of our Foundation's mission. We are diligently working to deliver new educational initiatives for the coming year, directed at various facets and disciplines within the healthcare community. Once complete, these initiatives deliver tangible tools into the hands of those professionals who can in turn pass them directly to families in need of support and day-to-day resources. Furthering FPIES education will continue to raise greater awareness to this rare disorder.
This awareness, coupled with improved FPIES education for medical professionals, will set the stage for increased interest in FPIES research. More importantly under these initiatives, special projects, and the resulting increased awareness, children affected by FPIES will gain opportunities for improved quality of life and better daily FPIES management. Our children deserve to have brighter and more pain-free days. At The FPIES Foundation, we will continue to move towards achieving these goals as we maintain focus on the heart of what brought the Foundation together in the beginning—the families and the children we care for and empower every day.

This article co-authored by Amanda LeFew and Joy Meyer. 

Amanda LeFew is the mother of two girls diagnosed with FPIES. To read more about the family's journey, please visit Amanda is a founding member and Co-Director for The FPIES Foundation.

Joy Meyer is the mother of four, their youngest child, Sam is living with FPIES. To read more about the family’s journey, please visit Joy is a founding member, and Co-Director/Chair for The FPIES Foundation. 


Sunday, August 25, 2013

The FPIES Foundation Celebrates Anniversary

The FPIES Foundation Celebrates Anniversary with Huge Social Media Awareness Day
Allows families to Text-A-Wish to support Foundation’s Efforts

August 25, 2013 The FPIES Foundation is excited to celebrate its second anniversary of empowering, educating and helping families navigate Food Protein Induced Enterocolitis Syndrome, or FPIES. 

The Foundation is planning a week-long celebration leading up to August 31, 2013 honoring the medical professionals, volunteers, and most importantly, the families who help raise awareness.  These amazing, strong families live with this rare allergy every day and are the reason the FPIES Foundation exists.

The week launches Sunday, August 25th, 2013 with an exciting social media campaign filled with inspiring stories and the latest FPIES information and awareness opportunities.

The week caps off with the most aggressive FPIES Foundation fundraiser to date.  On Friday, August 30th we team up with the Wish Upon a Hero Foundation for a special social media awareness day.  FPIES Awareness will race across Facebook, Twitter and personal cell phones as people participate in our Text-to-Donate day.  Just text WISH on August 30th to 80077 to donate $5 to the FPIES Foundation and its efforts to help families.

FPIES is a rare and often difficult diagnosis.  It is a delayed food allergy affecting the gastrointestinal tract, typically diagnosed in infants and young children.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can cause severe lethargy, change in body temperature and blood pressure, and often lead to hospitalization. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.

The FPIES Foundation’s roots lie with families, started by moms who saw a vital need for information and resources.

Foundation Chair Joy Meyer says, “As we go into our 3rd year I am even more inspired to be a member of this community.  Families and medical providers come together every day to help children living with FPIES thrive.  We have this great community to thank for these growing resources, building awareness and support.”

Highlights this year include:

  • 501c3 Non-profit designation
  • A newly expanded website with an extensive FPIES “toolbox” to help families check symptoms, journal foods, and prepare for doctor visits
  • A provider directory filled with FPIES knowledgeable doctors and specialists
  • Launching “FPIES, Now I Know” an awareness video inspired by real FPIES families
  • Awarenessis Action” campaign with brand-new resources families can print out to help educate medical professionals and raise awareness in their communities
  • An expanding Medical Advisory Board dedicated to a multidisciplinary approach to FPIES
  • The formation of a Volunteer Advisory Board made up of active members of the FPIES community
  • Social media outreach through Facebook/Twitter/Pinterest and the FPIES Foundation blog
  • Awarded certification from HON (Health on the Net) Code, “the commitment to reliable health and medical information on the internet.”
  • FPIESFoundation supported regional monthly gatherings, and tools to help families start their own FPIES Foundation meet-ups
  • Participation in Feeding Tube Awareness Day, Rare Disease Day and Food Allergy Awareness Week
The work doesn’t stop here.  The FPIES Foundation is excited for the year ahead with plans to launch a first of its kind ‘For Kids’ page, including a Child Ambassador program where the focus is entirely on the child, and not only on the child’s FPIES.
We will continue partnering with organizations to increase awareness and education while lobbying to create standardized practices for FPIES diagnosis and treatment.

The FPIES Foundation is an Incorporated 501(c)(3)Non-Profit Foundation. It is a collaborative effort of several families affected by FPIES whose relentless journey has sparked the desire to help other families find their way. FPIES is often under recognized and poorly understood. The organization's founders identified a dire need for tangible support resources for both the affected families and the medical community. The FPIES Foundation is committed to providing a credible and interactive support resource for this rare, oftentimes isolating diagnosis. It strives to make the everyday lives of FPIES children and their families easier.

This post was written by the Executive Board of The FPIES Foundation 

Tuesday, August 20, 2013

A Special Preschool designed with Allergies in Mind

It's back to school time.  Time for school supplies and new backpacks, new clothes and fresh haircuts.  For families living with FPIES, back to school time means something else.  Time to worry if your child is safe at school.  Time to worry about every birthday treat, special snack or basic lunch that is served. Time to worry about educating teachers.  Time to worry that special allergy tables could isolate your child.

Imagine a school where the mission is to take that worry away.  A school where allergies are the norm.  A school with a zero reaction rate in its entire history. 

St. Stephen's pre-school in St. Louis, MO prides themselves on being a safe allergy-free environment. Laura Schulte founded the school 12 years ago after 2 scares with her own children who both suffer from multiple allergies.  She tried 2 different schools and ended up in the emergency room 2 days in a row with her boys.  She couldn't go back to work because she couldn't keep her children safe.

"It’s tiring and it’s isolating being a parent of an allergy child.  I cannot believe how alone I felt in this.  I remember thinking I never wanted anyone to feel like that," Schulte says.

She decided to do something about it, helping found St. Stephen's Allergy Free Pre-School.  The school is completely free of the top 8 allergens and then will further eliminate other foods as needed to accommodate children.  The school prepares all meals and all snacks.  Schulte oversees the grocery shopping and personally chops the fruits and vegetables for about 70 children a day.  Schulte prides herself on never having a child come through the school and have an allergic reaction.

The school also isn't just about keeping the kids safe.  It's about making them feel included.  There are no special allergy tables, no birthday cakes being passed around that every child can't enjoy. 

"If one child cannot have it then we just don’t have it," Schulte says.  "We don't separate the kids. The whole purpose is that everybody can sit and be together.  I think the majority of parents appreciate the all inclusive atmosphere that we have."
That all inclusive atmosphere makes St. Stephen's an attractive option to a lot of other children too.  Schulte says they get many special needs children, children who use wheelchairs or are autistic, or have diabetes.  She also says more than half of the children don't have any allergies or health issues.

Schulte says she knows FPIES children can be more complex than children with more mainstream allergies.  Every FPIES child is different, with different triggers. St. Stephen's might not be able to accommodate a child who can't eat anything, but she says they're willing to try.

She says parents have to be their child's biggest health advocate.  Most parents don't have a school like St. Stephen's near them so she offers this advice:

·  Look for a school that can accommodate your WHOLE child
·  Ask questions and come up with a plan before the school year starts (At St. Stephen's they help parents transitioning to public schools come up with a 504 plan which specifies no one with a disability, including food allergies, can be excluded at school)
·  Sit down and explain your child's allergies to the school nurse
·  Be realistic and honest with teachers and staff

12 years later Schulte's sons are now 16 and 14 years old and 849 children have come through the doors of St. Stephen's.  Schulte and her staff have learned a lot and Schulte hopes she's making a difference, helping these families feel there's a safe place for them. 

She says wherever you live, shop around and find a school that's a really good fit.

"You’re going to have people who think you are that crazy parent.  You have to thicken your skin a little bit because you are that crazy parent. You don’t want to be that crazy parent but you have to be that crazy parent."

Visit Allergy Free Preschool website here:

Interview conducted, and article written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7

Sunday, August 11, 2013

Our FPIES Story: Introducing Dr.Nichole Huff

Our FPIES Story
Nichole L. Huff, Ph.D., CFLE

My firstborn was a textbook baby, which was fitting because I prepped for motherhood as best I knew how—I studied.  I read parenting magazines and child development books and perused baby websites.  Surely my daughter read them too, never missing a milestone.  Parenthood seemed to come naturally, as did our decision to try for Baby #2.

As the ever-so-experienced mom of an 18-month-old, my prep for our son’s delivery was much more relaxed.  After all, I’d been there and done that.  How different could another baby be?

And so our FPIES story began.

At 11 days old, after an evening feeding, my son began to vomit.  Profusely.  From his nose and mouth came what appeared to be thick, undigested breast milk.  I tried to clear his airways, but couldn't work fast enough.  He began to choke, his body paled, and his arms and legs became lifeless.  My mother and husband worked to keep our son alive while I shielded our daughter from the scene, called 9-1-1, and waited for the ambulance to arrive.  My son’s cries never sounded so beautiful.

The hospital personnel were perplexed, as was the pediatrician during follow-up care.  It’s rare that a baby has a reaction to his mother’s milk, I was told.  After trying an elimination diet to no avail, I offered my son cow’s-milk formula.  The first time, he did well.  The second?  Two hours later, as we attempted our first family-of-four road trip, I yanked my eight-week-old from his infant seat while my husband pulled off of the Interstate.  My son’s vomiting was once again intense and he became pale and lethargic.  We spent the next two hours parked at a gas station as I held my baby boy, too scared to move.

Following my mother’s intuition (as our pediatrician was of little help, telling me It’s normal, that It’s likely reflux, and that Babies that young rarely have milk allergies), I tried a soy-based formula containing no milk derivatives, which seemed to do the trick.  His reactions didn't return until he was seven months old after having tried a jarred baby food.  Like clockwork, two-to-three hours later, my son was throwing up, losing color, and his body was becoming limp.  I retrieved the food label, and sure enough, milk was an ingredient. 

Luckily for us we had relocated for my husband’s work a few months prior and found a fantastic pediatrician who closely monitored our situation.  She also promptly referred us to a pediatric allergy specialist who properly diagnosed our son with Food Protein-Induced Entercolitis Syndrome (FPIES), specific to milk proteins.  She equipped me with information, taught me how to properly read food labels, and educated me so that I could educate those who interacted with my son.

Following his diagnosis, I cried.  A lot.  Partially because I was so relieved to have a medical answer to the food struggles we’d been having.  But also, I cried for the loss of normalcy that my son would experience.  I grieved for him, and for the “textbook” childhood he wouldn’t have.  I can remember sobbing uncontrollably in the aisle of a grocery store wondering if my son would be able to have a first birthday cake.  I decided that day that, yes, he would.  If my son had FPIES, then I would become an FPIES expert.  I learned to remove the world “normal” from my vocabulary, deciding to not only accept his dietary restrictions, but to celebrate them.  (And slowly understanding that no child was textbook, no family normal, and that most people were managing a life stressor of some sort.)

In the weeks and months that followed, I spent countless hours researching FPIES.  I spent evenings alone at different grocery stores, walking each aisle, carefully reading food labels.  I learned which brands were safe and which weren’t.  I tried recipes and adopted new cooking strategies.  I learned to make safe substitutions while cooking so that—quite literally—my son could not only have his cake, but he could eat it too.

Being the mom of a kid with a food allergy is challenging.  There is the constant fear that one wrong bite could send your child into shock or make them terribly sick.  Having now managed my son’s FPIES daily for four years (and having experienced a failed oral-food challenge at age two and a half), my approach to parenting has evolved.  We’ve taken those scary steps that every parent of a special-needs child faces.  From leaving your child with a babysitter to selecting a safe preschool to attending birthday parties and everyday events that are otherwise taken for granted.  And we’ve not only survived—we’ve thrived in spite of it all.

In the months to come, I will talk more about parenting a child with FPIES—not only as an FPIES mom, but also as a professor of child development and family relationships.  From talking with healthcare professionals, to friends and family, to educators, to childcare providers, to talking with your FPIES child.  I’ll discuss ideas for making your child feel included in a world that often ostracizes differences.  I’ll explore ways that you can take care of yourself (despite feeling overwhelmed as you manage your family’s own FPIES story).  If you have a special topic that you’d like me to address, please let me know.

It takes a village to raise a child. 
It takes an informed, understanding, cautious, and collaborative village to raise a child with food allergies.

Nichole Langley Huff is an assistant professor and Extension Specialist at North Carolina State University.  Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy.  She is a Certified Family Life Educator with the National Council on Family Relations.  Her areas of research include child development, parent-child communication, and bio-psycho-social health.  Dr. Huff also has a weekly parenting blog at