5 Ways to Thank a Doctor!

March 30^th was National Doctors’ Day. Doctors across our country were recognized for the dedicated and tireless work they do each day. Everyday, we acknowledge and appreciate the contributions of the many great practitioners that support our children and families affected by FPIES.  We'd like to suggest some fun ways to show your gratitude down below, but first a quick word on finding a great doctor.

Because FPIES is an uncommon condition, many healthcare professionals may not be familiar with it, making it difficult to find the right doctor for your little one. That’s why The FPIES Foundation has put together our Provider Directory, a searchable database of healthcare professionals that have been recommended by FPIES families and physicians. Just enter your location in the search box to find suggestions for doctors in your area.

However, if you’ve already found a fabulous physician, here are 5 ways to thank him or her today:

1. Probably the easiest way to thank a doctor is to send them a note to let them know how much you appreciate their hard work. Just jot down a few lines on a card and slip it in the mailbox or take it with you at your next appointment. If you’d like to do something a little more fun, check out this handmade lab coat card tutorial. Or get your child involved by having them color one of these free printable thank you cards.

2. Of course, one of the best ways to thank a care provider is to recommend their services to someone you know. If you haven’t already done so, you can contact us and request that we include your doctor in our Provider Directory. Or you can write them a positive review on a physician rating website. Just do a Google search for your doctor’s name and you’ll probably find that one or more rating websites come up in the results list. Pick one and leave a review to let others know why you love your doctor.

3. You can also use social media to let others know how great your doctor is. Share your FPIES story on Facebook or another social media site and be sure to mention which doctor(s) made all the difference in your child’s life. Use #NationalDoctorsDay and link to your doctor’s social media account if they or their office has one.

4. Everyone loves a treat, so why not take a yummy surprise over to your doctor’s office? This blog suggests donuts and offers a printable gift tag that you can print out to accompany your gift. If your child has a favorite FPIES-friendly snack that you think your doctor might enjoy, you could also share a plate of that along with a thank you note.

5. If you’d prefer a non-food gift, consider sending some flowers over to brighten your doctor’s day, as well as his or her office. You can either send the real thing or help your child make one of these adorable paper plate flowers.

While a visit to the hospital or doctor’s office is often an unpleasant experience, finding a skilled and compassionate doctor to help care for your child is a blessing, especially when that child has been diagnosed with FPIES. Be sure to let your care provider know how much you appreciate them.

This post was written by FPIES Foundation volunteer Aubrey Fredrickson.  Aubrey is a freelance writer and mother of two. Although not personally touched by FPIES, she is grateful for the opportunity to be involved with the families and volunteers of the FPIES Foundation.

Jeanelle Boyer, PhD and an FPIES Research Update

Have you ever looked back upon your life and been in awe as to how everything seems to have worked out for some higher purpose? I am still amazed at how many of my life choices were, unknowingly, preparing me to be the mom of an FPIES baby.  A PhD in nutrition, years teaching microbiology, a perfectly timed conference on the human microbiome, and a faculty position in Health Science at Keene State College were all invaluable as I struggled to find ways to help my little girl.  But, my daughter truly has been my greatest teacher.  She has brought me so much joy and has led me on the most amazing journey into health, wellness and all things microbiome.

Just over three years ago, my healthy, happy baby was born by emergency c-section.  She slept wonderfully, was breastfeeding like a champ and had that super soft, pink baby skin.  Unfortunately, all of this changed suddenly after a round of antibiotics for an ear infection at 6 weeks old.  All of a sudden, mild “spitting up” turned into severe GERD, she squirmed and wiggled all night unable to sleep, and she developed eczema on her entire body.  And the diapers….I will just say that they were not pretty!  It took a while, but we soon realized that she was allergic to everything that I was eating.  After months on severe elimination diets, we eventually switched to a hypoallergenic formula, and I finally had my happy baby back!  Normal diapers, soft clear skin, and comfortable sleep all night long!  Eventually, Ella was diagnosed with FPIES and we have been slowly trialing foods for the past three years.  It took her awhile to tolerate anything, but overtime she has gained foods and is now happily eating about 30+ foods. 

 I was exposed to antibiotics during pregnancy and during childbirth, and Ella was exposed as an infant.  Although not all FPIES parents have a similar story, I was amazed at just how many other parents did relate stories of antibiotic usage and concerns about “gut health”.  From all of my knowledge about the critical role that the microbiome plays in health, I couldn’t help but wonder if the microbiome was playing a role in her FPIES.  Luckily, I was in a position to actually test this hypothesis as part of my scholarship at Keene State.  Thanks to funding from the FPIES Foundation, Keene State College, NH-INBRE, and Ubiome and a wonderful collaboration with Dr. Yuan at Masss General, I have been able to design two studies that explore the connection between the gut microbiome and FPIES.

We have billions of bacteria living all over us with an especially high concentration of bacteria in our gut.  Recently evidence has been accumulating rapidly suggesting that these little microbes play a huge role in health and wellness.  Scientists all over the world are exploring the connection between the gut microbiome and allergy, autoimmune disease, GI disease, cardiovascular disease, and even neurological disease.  It is truly amazing!  Unfortunately, we have been living in a society that is pretty hard on our microbiome.  Changes in diet, an increase in antibiotic usage, less time spent in nature, and the abundance of antimicrobial compounds in the environment, have all led to decreasing diversity in the gut microbiome.  The full extent of this problem is still being studied, but many researchers believe that this is causing an increase in inflammatory and allergic disease around the world. 

So, where are we now? With the help of two wonderful Keene State students, I have collected survey data and microbiome data from a group of infants with FPIES and group of infants that do not have any allergy.  We are in the process of analyzing the microbiome data, but are already seeing some interesting trends in the survey data.  For example, antibiotics usage was higher in FPIES infants compared to allergy-free infants, and interestingly, maternal antibiotic usage during pregnancy was also higher in the FPIES infants when compared to the allergy free babies.  

As we continue to analyze data from the first study, we have also launched a second study that looks at older children with FPIES.  FPIES families often hear that many kids outgrow FPIES around age three.  That is the case for many, but not all.  Previous research has shown that the infant microbiome tends to become more “adult-like” around the age of three.  I wondered if this shift in microbiome, might explain why some kids outgrow FPIES.  However, if some kids had a severe dysbiosis or some kind of opportunistic pathogen in the gut, perhaps they would not outgrow FPIES as easily.  To test this hypothesis, we have just launched a study to compare the gut microbiome (both bacterial and fungal) of children aged 3-9 with FPIES to kids who have outgrown FPIES.  To complete the study we will also be comparing both groups to allergy free children.  We are in the process of recruiting participants now, and are very excited to see the results of both studies!

As is the case with a lot research projects, we could not do this work without your help!  I am incredibly grateful for all of the support that I have received from the participants in both studies…but we still need more participants for the FPIES children study.  If you are interested in helping out with this research, see below for some ideas.

HOW THE COMMUNITY CAN HELP:

1. Participate in the project- if you have a child between aged 3-9 years old that has been antibiotic free for the past month and either 1) has FPIES 2) has outgrown FPIES or 3) is allergy free, then you could potentially join the study!  Participation involves taking one or two stool samples from toilet paper using a provided kit and completing an online survey.

2. Spread the word- share with friends and family who may want to participate or share FPIES awareness.  Again, we need both FPIES and allergy free kids, so share with everyone!

Many thanks and best wishes to you all! I am confident that together we will figure out this crazy disease!

Please contact Maddy Carroll at madalyn.carroll@ksc.keene.edu. Or, you can also contact Jeanelle with questions at jboyer@keene.edu

This post was written and submitted by Dr. Jeanelle Boyer, who is currently researching the microbiome in the gut of infants affected by FPIES at Keene State College. To learn more about Dr. Boyer's background and her previous research work, please watch her webinar from FPIES Global Day 2016.

An Interview with the Awareness Critters Creator!

I was working on my master’s degree in health communication when I met my husband. Fast forward a year and a half later, I was sitting in the NICU with our newborn daughter feeling like I should have paid more attention to the practical aspects of the degree I had been working on. I thought when we left after that hellish week, that would be the worst health thing our daughter would ever go through.

I was wrong.

Fast forward again to when our daughter was 15-months-old, I sat in the parking lot of an allergist office crying with relief and joy. We finally had a name to what had been going on with my daughter – FPIES. I found The FPIES Foundation and through them various online support groups. I found a virtual village of other parents that were leading equally ridiculous lives and that “got it.”

One of the ways I deal with stress is through art, painting, sewing, drawing, knitting, and so much more; really, I have tried my hand at anything artistic over the years, even glass blowing!

One night I was laying in bed—exhausted -- it had been a long day with a toddler and 4-month-old both reacting to something. As a mom of two children with FPIES and other various medical complexities, I am used to being exhausted, but somehow that day was especially draining.

By some miracle they had both fallen asleep relatively early. By all that was good and holy, I was going to take advantage of that and get some sleep! I lay down, but my brain wouldn’t stop working. I kept thinking about how my children had such different lives, how my family had such a different life, than almost all of my friends. I thought of all the medical debt we were not so slowly accruing, and how terrified and helpless it made me feel to be treading water emotionally and financially so much of the time, on top of the already helpless feeling that comes from seeing your child(ren) sick so much of the time. I sent out a desperate prayer (one that I had said many times before), of, “Please help me figure this out! Please help me figure out how to take care of my family!”

All of a sudden, a fully formed idea flashed in my mind of a line of illustrations featuring animals or critters with different special and rare needs. Lists and images started zipping through my brain and instead of falling asleep I was rolling over and reaching for a pad of paper.

Several hours later, I had a paper filled with ideas for different animals that I had dubbed, Awareness Critters. I also had sketched out and then painted an illustration with a mother mouse and her child carrying teal pumpkins.  With Halloween coming up and Global FPIES Day right around the corner, with allergic reactions of my children fresh in my mind, I felt inspired.

I went to bed feeling happy. It had been a long time since I had been creative and suddenly I felt like I had found a calling – even if I was the only one who ever saw the paintings.

Hesitantly, I posted my painting to my own Facebook page and then to a couple of Facebook FPIES support groups. I shared the start of my idea and waited to see how people responded. I felt like I had just jumped naked in front of a giant crowd, and honestly wondered if my art was good enough, and if anyone would like the idea . Self doubt can be exhausting!. 

I was overwhelmed by the positive response and then by requests for illustrations to feature specific issues - diabetes, vision issues, Gtubes, NG tubes, leg braces, epilepsy, and so many more. Obviously, I had hit upon an idea and a need that wasn’t being met.

I believe that everyone, especially the youngest and most vulnerable in our society, should be seen, heard, and loved for who they are and not who the media or society says they “should be”. We are all deserving of love and compassion. We all have the same basic wants, needs and even dreams.

My hope for these Awareness Critters is that they bring awareness to families and individuals struggling with Rare and hard issues.

I have big dreams for these Critters, bigger than I even want to admit out loud yet. I dream of being able to do something that I love, that can support my family and bring about positive change in the world. I dream about being able to bring awareness to the amazing children and families that face the challenging situations that special and rare needs bring daily. I know the exhaustion, terror, isolation, and joy that come with raising these amazing children. I dream that Rare won’t mean “unheard of” anymore! 

This post was written by Brittany Huston.  Brittany is the mama of four beautiful children, the two youngest have multiple complex medical conditions, including FPIES. Her family lives on a small five acre farm in the high desert of New Mexico. Brittany's days often consist of running around after small children, working on craft projects, and chasing free-range turkeys out of the family's garden. She uses her family's daily life, the joys and the struggles, and the nature that surrounds her to help inspire her art and writing. 

Helping Families Navigate the Emergency Room with a Rare Disease

FPIES Foundation Joins in #RareErChat on Twitter

The FPIES Foundation joined as the National Organization forRare Diseases (NORD) and Texas Children's Hospital hosted a Twitter Chat aimed at helping navigate emergency room visits with a Rare Disease.

NORD started the chat with some statistics that show rare diseases aren't that rare. They say 1 in 10 Americans are affected by some sort of rare disease. A rare disease is one that affects fewer than 200,000 Americans.

Topics discussed included challenges children face in the emergency room. Many rare disease communities, including the FPIES community report struggling with doctors and nurses not familiar with the diagnosis.

Suggestions for parents include working with medical professionals on an ongoing basis to increase understanding and bringing information on a rare disease from a trusted source. For FPIES families the Foundation provides an emergency plan on our website. We also now offer the FPIES Foundation app free to download.

The discussion also gave tips on making children comfortable in the emergency room - having an ER bag at the ready filled with comfort items and medical records. Many hospitals also have a child life specialist you can ask for to help comfort and engage your child.

Other suggestions:

• bring a photo of your child at baseline
• ask ER staff to phone your pediatrician or lead specialist
• inform your child's daycare or school of your emergency room preference

To see the complete TweetChat search #RareErChat on Twitter.

Follow on Twitter:

@FPiesFoundation

@RareDiseases (NORD)

@TexasChildrens

This 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

Our Sensory Preferences & Mealtimes

An interview with co-authors of the newly released book “Sense-

ational Mealtimes” Denise Stapleton, PhD, Accredited Practicing Dietitian & Gillian Griffiths, Occupational Therapist.**

Mealtime should be enjoyable, yet some children struggle, and their families struggle.  Mealtimes for some families are fraught with ongoing grimacing, gagging, distress, anxiety, worry, frustration and anger. Do these phrases sound familiar?  “He won’t try new foods”. “She won’t try new textures”. “He spits food out of his mouth”.  

Mealtime problems can be a common toddler trait. However, they might be more common in children with FPIES due to negative, even traumatic, past experiences with food. It makes us wonder: how do you know when it’s more than just a fussy phase and is it going to get worse if you don’t do something about it?

What causes mealtime difficulties?

There is a long list of things that can trigger eating to be tricky.  For example; premature or complicated birth, early hospitalization, medical or developmental conditions, pain, trauma, excessive stress, reflux, vomiting, ear, throat or chest infections, allergies, intolerance's, and constipation are some of the conditions that can contribute to complex mealtimes. FPIES can interrupt and delay the process of introducing solids to an infant and can complicate a toddler’s progress with textures. Post-natal depression, anxiety and stress can also make mealtimes tricky for some families.

What can we do about mealtime difficulties?

After attending to medical needs, one of the key areas to explore in order to create enjoyable mealtimes is your own and your child’s sensory preferences.  Our sensory preferences influence what we notice, tolerate, seek, avoid and are distracted or distressed by.  Understanding preferred sensory properties of food and mealtimes might be a key.

What are sensory preferences?

Sensory preferences are the sights, sounds, and types of touch, smells, tastes, temperatures, textures and types of movement we prefer in our day.  

Sensory preferences are unique to each individual as they are based on: sensory thresholds in the brain; genetics; the surrounding environment; feelings; interactions and experiences during each day and across a lifetime (ie memories). On top of this, pain, stress, trauma, fatigue, reflux, vomiting, infections, allergies, intolerance's and constipation may make a parent or a child more or less sensitive.  

Discovering sensory preferences takes time as we may have a different threshold for each sense and the amount of sensory information we avoid, tolerate or seek more of can change during the day.  At times, parents can also project their own sensory preferences onto to their children.

How do sensory preferences affect mealtime behavior?

During mealtimes we use EVERY sense to help us notice, interact, socialize; and to eat, to use utensils and to be seated (or not).  We continually use our senses to gather sensory information from our surroundings and our body in order to ensure our mealtimes are emotionally safe, successful and enjoyable.

Our sensory preferences directly influence our thoughts, feelings, memories, interactions with others and our behavior.  If our brain detects or remembers an experience that feels unsafe, worrisome or dangerous, our body might experience a Danger Center Response (fight, flight, freeze or fright).  These strong feelings might be associated with the sensory properties of certain foods, the surroundings or interactions and can have a very large impact on mealtime behavior.

Exercise: Can you remember eating a food that caused you to feel unwell or vomit?  Can you tolerate the smell, sight, taste or texture of that food now?  How does it make you feel?  What would you do if you were forced to eat even just a little bit? How would you behave?

What we and our children experience can affect our thoughts and how we feel, and these can affect our behavior. Similarly, our behavior affects how we feel and our feelings can make us more or less sensitive to certain stimuli. As we explore in the book, it is so helpful for parents to always tune in and wonder what might have caused a child’s behavior. Ask yourself, how were they feeling, how were you feeling, what might have affected those feelings? This wondering can help us identify and do something about the potential triggers to alleviate or prevent the undesirable behavior.

How can I help my child feel safe at snack and mealtimes?

You can support your child’s ability to stay calm by taking time to "SENSE-itively" tune in to his or her cues. When you tune in to your child’s sensory preferences, you can create a ‘just right’ experience that will feel emotionally safe for everyone and hopefully bring pleasure.  Ongoing pleasurable mealtimes can positively shape a child’s mealtime behavior and the types or range of food he will eat.  

The authors acknowledge typical strategies may not have been successful for many families with ongoing mealtime difficulties. The book reinforces:

1. That each child is incredibly unique,
2. Parents are the experts in relation to their child; and
3. With the new understandings that the book brings, parents are enabled to develop unique ‘just right’ strategies for their child, with the help of a supportive clinician if needed.

The authors are at the forefront of applying all the evidence in sensory processing across a lifetime. This enhances our understandings of mealtime difficulties. SENSE-ational Mealtimes is the first to enhance caregivers’ capacity for reflective functioning through the understandings about sensory preferences. The following article provides preliminary research results that strongly support the need for further research in this area. Families found the understandings in the book are a crucial missing piece of the jigsaw puzzle about mealtime difficulties: “Development and evaluation of SENSE-ational Mealtimes: a book for families with mealtime difficulties” (2013) by Denise Stapleton, Gillian Griffiths and Jill Sherriff. International Journal of Health Promotion and Education.

If your child is displaying sensory preferences and needs help, discuss this with your child’s Pediatrician, Dietitian or Therapists.   This article highlights one resource for navigating feeding issues related to sensory preferences. If you are looking to learn even more, here are some additional resources:

1. Living Sensationally (2008) by Winnie Dunn (occupational therapist) which explains what it means to have sensation everywhere given that people are sensory beings and the world is a sensory place
2. Just Take a Bite by Lori Ernsberger & Tania Stegen-Hanson
3. Feeding Challenges in Young Children: Strategies and Specialized Interventions for Success Paperback by Deborah Bruns Ph.D., Stacy Thompson Ph.D. 
4. Baby Sense (2007) by Megan Faure (occupational therapist) and Ann Richardson (nurse and midwife) helps parents understand their infant’s sensory experiences.

**Denise Stapleton is an Accredited Practicing Dietitian with many years experience in Pediatric nutrition and research. She passionately supports families with varying mealtime difficulties and therapeutic dietary needs as a private practitioner, senior community Dietitian, researcher, author and mentor. Gillian Griffiths an Occupational Therapist with extensive training in Sensory Processing and is co-director of Engaging Your Senses, providers of professional development. Denise and Gillian recently published the go-to parent guide book SENSE-ationalMealtimes and Facebook page.

The FPIES Foundation provides suggested links to other Web sites as a convenience to you. The Foundation encourages you to evaluate websites yourself and discuss the information you find with your health care provider(s).  Use of our Web site constitutes acknowledgment and understanding by the user that within our Website there may be links to other Web sites that are operated by parties or individuals that are not affiliated with The FPIES Foundation. Read more on our link policy.

FPIES Foundation joining forces with Rare Diseases Community and Global Genes

FPIES Foundation joining forces with Rare Diseases Community and Global Genes

350-million voices to make a difference

'You are not alone.' It's a mantra of sorts here at the FPIES Foundation. You are not alone on food trials, you are not alone at 3 a-m with a sick child, and you are not alone in the emergency room desperate for answers, and we will not let you be alone!

Rare Diseases Day 2015 is fast approaching on February 28th and we'd like to highlight the fact that you are not alone, and neither are we.

According to NORD and Global Genes, a disease that affects less than 200,000 people at any given time is defined as rare. FPIES is recognized as a Rare Disease, one of 7000 recognized by the National Institutes of Health. 

A rare disease is a disease that affects less than 200,000 people at any given time. That's 350-million people worldwide who might be battling a different diagnosis, but the fight for advocacy, awareness and research is the same.

That's why we're proud to partner with Global Genes - a leading global rare diseases advocacy organization.

Executive Director Andrea Epstein says when people are starting their rare disease journey it can be daunting.  Collectively, though, she says the Rare Diseases Community can come together so newcomers feel they 'don't have to reinvent the wheel.' Epstein says, "Chances are, tools for other rare diseases may be relevant,” meaning tools for day to day living that are useful for one disorder can help out another.

Global Genes specifically offers Rare Disease Tool Kits - collaborative resources updated in real time with comments and videos, focused on awareness, daily management strategies, and more. The idea is to draw on real life experiences so the next family can immediately benefit.

Took Kits currently available or in the works include:

-How do I become an empowered patient?

-Advocating on Capitol Hill

-Is genetic testing an option?

-Telling your story to raise awareness

Epstein says, "One thing we are very proud of is we create tools that all foundations or individuals can use." She points to Global Genes 'Blue Denim Ribbon Campaign' as a way everyone can raise awareness for Rare Diseases Day.

On the heels of Rare Diseases Day, Global Genes is hosting its first ever Giving Day. 'Give Rare' is March 3rd.  It's a day for the Rare Disease Community to come together in the hopes of raising millions of dollars for their individual causes. Check out the FPIES Foundation's 'GiveRare' page here: http://giverare.razoo.com/story/Fpies-Foundation 

Epstein says, "It feels really good when you know you have helped a family on their journey and made a difference." We couldn't agree more.

This article was written, and interview conducted 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.

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The FPIES Foundation Exhibits at NASPGHAN

In October, The FPIES Foundation was honored to attend the Annual North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) meeting.

NASPGHAN brings pediatric training and advancements to this yearly conference. We had the privilege of meeting and speaking with several hundred compassionate Pediatric Gastroenterologist Practitioners, Nurses, and Nutrition professionals, while providing them with information on Food Protein-Induced Enterocolitis Syndrome, as well as resources from the Foundation at our booth.   

A welcome reception by Dr.Gold, Pediatric Gastroenterologist at Children's Center for Digestive Healthcare in Atlanta and member of The FPIES Foundation Medical Advisory Board (MAB), opened this three day event on a Thursday evening. The welcome was immediately followed by the opening of the exhibit hall where providers presented their posters and visited exhibits, such as The FPIES Foundation's booth!

We were encouraged to meet a number of practitioners who are aware of FPIES; most knew of it because they had/have a patient diagnosed with it. So many of the practitioners we spoke with echoed our belief that more research is needed for this complex allergic syndrome. These compassionate physicians and health professionals shared their sincere gratitude for the resources and support that the Foundation provides, empowering families and providers. 

We were so happy to have Melissa and Heather, parents of children living with FPIES, volunteer with us to help at the booth! Connecting with other families is always such a special treat! We were also privileged to meet other exhibitors such as the Tube Feeding Awareness Foundation, Nutricia North America, Nestle Nutrition, Abbott Nutrition, Dr. Shar, Frida Baby, Real Food Blends, QOL Medical, Apfed and many others. When touring the exhibition hall, we were very pleased to see FPIES being represented at Abbott Nutrition's Elecare display! 

Saturday's events brought the NASPGHAN Council for Pediatric Nutrition Professionals (CPNP) Nutrition Symposium and Annual Meeting. This included a session dedicated to FPIES! Presented by Dr.Karen Freedle, Allergist at Children's Hospital of Atlanta and Bailey Koch, Registered and Licensed Dietitian at The Children's Center for Digestive Healthcare in Atlanta, this popular session was attended by Dietitians eager to learn more about FPIES and how to help families with their children's nutritional needs.

We were so honored to have been a part of this conference-- building FPIES awareness, sharing Foundation resources, and empowering these multidisciplinary medical professionals that care for children living with FPIES. We hope to continue spreading awareness and resources in future conferences in the coming years!

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

Global FPIES Day Impact!

From the moment The FPIES Foundation announced the day in August to the official proclamation released on Global FPIES Day itself, the FPIES community has been making a great impact for the first Global FPIES Day! Immediately, our community set out to raise awareness in families' hometowns and host fundraisers, assisting the Foundation in building awareness and support to empower families and the medical community on this special day and all year round!

Global Day was established by The Foundation as a day specifically set aside for FPIES, a day to hone in on specific awareness, education and outreach objectives. An “FPIES: Be The Voice” awareness ribbon was developed for The Foundation and Global Day by an FPIES family. The unified colors of teal and orange hold great significance. Teal represents Food Allergy Awareness and Orange signifies strength and advocacy, mirrored in the Foundation logo.

On the days leading up to Global Day, the sharing of the "Be the Voice" Ribbon Frames was astounding! In all, this Facebook album reflects the faces of 220+kids (and advocates supporting them!) from around the globe! Additionally, over the week our social media pages increased in followers, and our FB posts reached over 21,000 viewers!

Awareness was built through your “Share Your 14”efforts in your community, by sharing what Global Day means to your family, and by creating the “Be the Voice” Ribbon frames! Fundraisers raised awareness and funds from events such as: T-fund Global T-shirt sales, Jamberry Nails, Etsy shops, and HP Threads custom designs. Jersey Mikes in James City, North Carolina, set the tone for establishing local awareness! The Cafe Press-FPIES Foundation storefront and Bravelet sales demonstrated the FPIES community's commitment to spreading awareness, fashionably!

We were thrilled to see kids getting in the action! There was Vivian and her custom glitter tattoo (made to her request!), and the magnitude of photo shares of kids raising awareness in Global day t-shirts. We “met” siblings creating unique Global Day flags, and were so moved by the actions of countless others! It is so powerful to see such a community of budding advocates! Great work, kids!

Our partners at Sarah's FPIES Clubhouse hosted events all month long, leading up to the big day! From naming the Awareness Heroes (be sure to stop by The Clubhouse and meet Super Sally and Flying Freddy!), to mazes and coloring events created just for the day, the Clubhouse was the place to be for kids in action!

We were excited to see several families sharing their stories in news stories, as well as online and print publications:

·         "I want you to Know about Why My Son Can't Eat", published on the Leaky Boob.com.
·       "Local Couple Seeks to Raise Awareness on Invisible Allergy" published on the Beaumont New
·       Cohen's Story, appearing on WOAY Newswatch

The work doesn't stop here! The Foundation has been following the guidelines set out to establish the day as an officially recognized National Health Observance Day. Please continue to follow our website's “News & Events” and social media postings, as we work with Advocacy representatives assisting this community in achieving this goal. There are always ways for all families and communities to pitch in-- keep posted  to learn how you can help throughout this process and beyond!

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

Fall Family Food Allergy Events!

 The FPIES Foundation has participated in several food allergy awareness events this fall! 

On September 13th The FPIES Foundation was once again honored to provide families with FPIES information on at Boston Zoo on a day for families living with Food Allergies sponsored by Boston Children’s Hospital FACET program. 

October, along with sponsoring Global FPIES Day worldwide, brings us raising awareness locally in Massachusetts and Minnesota! 

On October 5, 2014, we were honored to be among the exhibitors to have a booth at the FARE Walk in Boston.  Amanda LeFew, Co-Director of The FPIES Foundation, greeted families and raised awareness to Food Protein Induced Enterocolitis Syndrome, a different type of Food Allergy. FPIES Foundation Volunteer, Victoria Warren, Emceed the event and Medical Advisory Board Members Dr. Lee, Dr.Yuan, and Dr. Shreffler were in attendance and met up with a large group of FPIES Families!

October 11, 2014, The FPIES Foundation participated in The FASGMN Food Allergy Resource Fair for the 4th year. Joy Meyer, Co-Director of The FPIES Foundation was on hand to raise awareness to FPIES, and included providing CheeCha Puff samples, donated by our partners at CheeCha puffs!

The FPIES Foundation is committed to building awareness, education and support to families affected by Food Protein Induced Enterocolitis Syndrome, our shoes may be small but our steps will be big! We wrapped up this season of awareness by participating as an exhibitor in the NASPGHAN conference in Atlanta! Truly, a big step--- the FPIES Foundation was the first FPIES advocacy non-profit organization to participate in this esteemed National Pediatric GI conference! Watch for future posts about details regarding this successful event!

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

Trick-or-Treating with Food Allergies

Last year we shared some of our favorite tips for keeping your children safe, and included, during the Halloween festivities in our Allergy Friendly Halloween post. Be sure to check it out!

This year, many families are participating in the Teal Pumpkin Project, brought to us from FARE. The organization states: "This campaign encourages people to raise awareness of food allergies by providing non-food treats for trick-or-treaters and painting a pumpkin teal - the color of food allergy awareness - to place in front of their house along with a free printable sign from FARE to indicate they have non-food treats available. Learn more:http://www.foodallergy.org/teal-pumpkin-project”

We encourage you to visit FARE’s website to participate in this great project!

Before you head out this year, we wanted to share something one of our families made to use in their neighborhood-- they shared with us to share with you! Print these out (there is one for a boy and one for a girl) and then bring your safe treat (food or non-food) with this note to your neighbors house before you head out trick-or-treating with your little one. This lets everyone know ahead of time what your trick- or-treater is dressed as and what safe treat (provided by you!) that the neighbor can give to them!

For Boy

For Girl

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

October 2016, edited to add cards appropriate for non-food treats: 

Non-food for Girl 

Non-Food for Boy

The Proclamation for Global FPIES Day

Today, on Global FPIES Day, at The FPIES Foundation, we are proud announce the official proclamation for the day.

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. Collaboration among medical professionals, families and affected patients, and global partners allows for furthering awareness, promoting advocacy, and fueling future research, worldwide.

Food Protein-Induced Enterocolitis Syndrome, FPIES, is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profuse vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, a negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.

For individuals affected by FPIES, significant delay in diagnosis can be common, which may lead to increased acute episodes and compromised quality of life. Lack of conclusive diagnostic testing and diagnosis management strategies can impact the standard of care received by these individuals. Lack of awareness among medical professionals can affect appropriate diagnosis and follow-up care. In honor of Global FPIES Day, we aim to raise greater awareness to this often misunderstood diagnosis. At The FPIES Foundation, we not only recognize the need for research to help future children and their families, but we also recognize the need to help our families and medical professionals now by providing education, advocacy and support resources, online and in our global community.

On Global FPIES Day, we continue to further awareness through providing resources, such as printable packets for medical provider, school/caregiver, and patient education, respectively. Flyers and printable informational materials are provided for promoting community understanding. Interactive activities, such as creating “Be the Voice” social media frames and taking part in “Find Your Fourteen,” foster advocacy among patients, families, medical providers and our partners. The website, www.fpiesday.com, provides additional resources and tools to further the mission of Global FPIES Day.

Throughout the year, we at The FPIES Foundation uphold the ideals and promote the mission of Global FPIES Day. We continue to invest our resources in outreach worldwide, for medical providers and families alike-- a provider database, bi-lingual resources, printable forms and documents, and other tools to empower our community to support individuals affected by FPIES. We expand our global partnerships through project collaborations and resource sharing. Our FPIES Global Patient Registry provides information on current trends reported by FPIES families and is made available to researchers in the field, fueling future novel scientific endeavors. Our dynamic and diverse medical advisory board provides multidisciplinary support to our ongoing initiatives. 

Imagine parents holding their sick child in the dark night, scared and alone, not knowing where to turn for help. Envision the light that knowledge and the insight of an informed global community can bring to these dark nights, to these children and their families. We invite families, medical providers and partners worldwide to strive toward improved patient and provider education, community support and advocacy for all affected individuals and their families.

NOW, THEREFORE, we, The FPIES Foundation, a nationally recognized 501c3 non-profit organization and sponsor of this day, do hereby proclaim October 14, 2014, as Global FPIES Day. We invite the global community at large to observe this day with programs, ceremonies, resources and activities that promote education, support, advocacy and research for FPIES (Food Protein-Induced Enterocolitis Syndrome) worldwide.

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