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. 

Global FPIES Day 2016 Impact: How we made a difference

It’s been a month since we celebrated Global FPIES Day and we’d like to take a look back at all we shared and accomplished together.

Tools that Build Bridges

This year’s theme was “Tools that Build Bridges” and we were able to provide some amazing new tools to help families and spread awareness. They can be found on the Global FPIES Day webpage.

1. We released 9 video presentations for FPIES families. The entire playlist can be seen here.
2. We debuted our new Online Learning Library, where you can find multimedia resources for education and awareness.
3. We offered multilingual resources to reach out to a wider audience and help as many families struggling with FPIES as possible.
4. We focused on nutrition with the release of our nutrition worksheets, which can be found on the Global FPIES Day page and the Online Learning Library. We also talked about the Nutrition Webinar, which was held on October 25^th.
5. We partnered with The Mighty, an online community for people struggling with serious challenges, such as health or mental illnesses. Check out this blog post contributed by The Mighty for more information. We also used Facebook to ask you “What’s one secret you wish others knew about caring for someone with FPIES?” The Mighty used your answers to put together a wonderful blog post, 19 Secrets Families With FPIES Wish Others Knew.
6. We hosted an FPIES Twitter chat with Foundation volunteer Victoria Warren and MAB member Dr. Sakina Bajowala about the ins and outs of emergency care. We’ll be posting a summary here on the blog, so watch for that soon!
   

Families

And of course, many FPIES families found their own ways to build bridges and spread awareness. As in previous years, some created and shared a “I am the voice” picture frame. You can view the online album here.

Others took some time on Global Day to post about FPIES on Facebook, to change their profile picture to the FPIES day button or picture frame, and some even held their own events. Mom and LuLaRoe Consultant put together a family fundraiser, while the Litteral family handed out flyers featuring their “I am the voice” picture frame.

We want to thank them and all the families who reached out to others and found ways to talk about FPIES on Global Day!

Partners

We also want to give a shout-out to our partner organizations who helped spread the word by sharing information about FPIES and Global FPIES Day on their social media accounts and websites. Sarah’s FPIESClubhouse put on a great awareness campaign, including some Webkinz giveaways.

Several of our partners, including CMNuA, No Biggie Bunch, and Global Genes, tweeted or retweeted about Global Day. You can see those by searching for GlobalFPIESDay on Twitter. Others posted or shared our posts on Facebook, including AllergyFree, Feeding Tube Awareness, and My Munch Bug. You can see those by searching for Global FPIES Day on Facebook.

There were many, many other partners who got involved on Global Day and we are so grateful for all the support!

Presenters

Finally, we want to say thank you to the amazing presenters who created the online videos. Your contributions were a large part of this year’s Global FPIES Day and it wouldn’t have been the same without you!

• Kyle Brown, CEO of Patient Crossroads, for explaining the importance of the FPIES Global Patient Registry in “FPIES at a Crossroads.”
• Claudine Crangle, author of “Woolfred Cannot Eat Dandelions – FPIES,” for reading her delightful story for us.
• Dr. Jeanelle Boyer for telling us about her work in “FPIES and the Microbiome: A research update from Dr. Jeanelle Boyer.”
• Dr. Amana Nasir for giving us some very useful tips in “Preparing your child for GI tests and procedures.”
• Honor Genetski, MFT, for reminding us to take care of ourselves as well as our children in “Self-Care for Parents: Reflections for Caregivers.”
• Joy Meyer, Co-Director of The FPIES Foundation, for giving us a new recipe in “Making Hemp Milk.”
• Amanda LeFew, FPIES Foundation Co-Founder and Co-Executive Director, for helping us with our next awareness event in “Creating an FPIES Resource Table for Your Awareness Events” and for helping us foster coping skills in our children in “Creating Calm.”
• The Children's Medical Nutrition Alliance for teaching us about “Navigating Insurance and Medical Nutrition.”

To all who participated in Global FPIES Day 2016, you made a difference! We know that as we take these tools and move forward, we will continue to build bridges and find ways to help children and families struggling with FPIES.

We’d love to hear how you spent Global Day this year, so please comment below and let us know!

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.

Find Your 14 Tools to Get Involved on Global FPIES Day

This year we will be celebrating the third annual Global FPIES Day on October 14th. Once again we are encouraging you to find your 14! Reach out to friends, family, or community members and get involved this Global FPIES Day with one or more of these 14 suggestions.

#1. Create a “Be The Voice” picture frame.

Click here for details on how to download and create your frame. Then share it on your favorite social media site and invite 14 friends or family members outside the FPIES community to make one as well in honor of your little one.

#2. Create and display a FPIES awareness ribbon.

The orange and teal awareness ribbon featured on the “Be The Voice” picture frames is a visible reminder of the strength and advocacy of the FPIES community. You can get your whole family involved in creating ribbons that can be worn or used as decorations. Here are some ideas:

• You can find two printable ribbon templates here (one flat and one 3D). Print one out for each family member and let everyone decorate them in orange and teal.
• You can also use the flat template to create a stencil (just cut out the ribbon, leaving the rest of the paper intact). Then use the stencil to paint a FPIES awareness ribbon on a t-shirt, tote bag, notebook, or whatever you like!
• Make a perler bead awareness ribbon. You can see an example of a perler bead awareness ribbon here and a template for another version here. Just switch up the colors to create your own FPIES ribbon. When completed, these ribbons can be attached to keychains, necklaces, or just displayed as is.
• Make a larger awareness ribbon or wreath that can hang on your front door. You can find some beautiful examples by typing “awareness ribbon door hanger” into a search on Pinterest.

#3. Cook or bake one of your child’s favorite FPIES friendly snacks.

Take some time today to make one of your child’s favorite recipes and then share it with 14 friends or family members. Including a FPIES awareness card or flyer with each snack can be a great way to share FPIES information.

#4. Wear Global FPIES Day awareness gear.

You can purchase Global FPIES Day clothing and accessories from CafePress.com. Proceeds from the profits of these products go to the FPIES Foundation, so just making a purchase helps our efforts to advocate for FPIES families. You could also make your own FPIES gear (check out #2 for some ideas). However you get your gear, though, be sure to wear it proudly on the 14th!

#5. Share the Global FPIES Day button on your blog and social media sites.

This is a great way for partners and medical professionals, as well as families, to get involved. Just click here to get the html code that can be added to your blog or favorite social media site. If you have a child who suffers from FPIES, be sure to share your own inspirational story along with the button.

#6. Share FPIES educational materials with others.

Global FPIES Day is the perfect time to help your friends and family members better understand FPIES and how it effects your child and family. There are lots of great materials available at fpiesday.com. Take some time to go through the site and pick out a few materials that you can send to 14 friends or family via social media, an email, or a letter.

#7. Start a conversation for FPIES awareness.

Get in touch with a local parent group, breastfeeding support group, school, etc. and discuss the possibility of speaking with the group about FPIES. Be sure to let them know whether you are a medical professional or a parent who can speak about your personal experience. Be sure to check out the resources on our site about starting the conversation.

#8. Share posts made by The FPIES Foundation on Facebook and Twitter.

If you haven’t already, like or follow us on Facebook and Twitter. Then check out some of our recent posts and share a few with at least 14 people.

#9. Connect with 14 other families in the FPIES community.

You know firsthand what it is like to live with FPIES. Take some time today to reach out to 14 other families in the FPIES community and share a few words of support and encouragement. That might be as simple as a phone call or a message on social media, but just let them know that they’re not alone.

#10. Send 14 thank you notes.

Reach out to 14 people who have touched the lives of your family and helped you along your FPIES journey. Whether you send them an email, give them a call, or just send a quick note through social media, take time to say thank you for their support.

#11. Share the medical provider packet of FPIES educational materials.

If you are a parent of a child with FPIES, there’s a good chance that you struggled to find a doctor who could correctly diagnosis your little one’s condition. Help current and future FPIES families by reaching out to 14 medical providers and sharing the educational materials listed on fpiesday.com.

If you are a medical provider, Global FPIES Day is an excellent opportunity to learn more about this condition. Check out these 14 articles for professional education and development.

#12. Share the FPIES information packet for schools and day cares.

You can find information about spreading awareness to schools by visiting our website and clicking on the “Schools” tab. The information packet provides excellent resources to educate school and daycare employees.

#13. Promote the FPIES Foundation's YouTube videos.

Subscribe to our channel on YouTube and then select one or two of our videos to share on your social media pages. Just be sure to share with at least 14 people!

#14. Support fundraisers and awareness events for The FPIES Foundation.

You can watch for upcoming events on our website and Facebook page. If there is an upcoming event in your area, invite 14 people to come out and support our efforts to educate and advocate for FPIES families.

How will you find your 14 this Global FPIES Day?

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

The House That Awareness Built

It was a beautiful afternoon and my girls were so excited-- the long-awaited baking had begun!  Since they both have separate safe food lists and separate baking equipment, each girl got her own turn in the kitchen with mama.  My eldest tied on her apron, read the recipe, and started measuring. When I reached over to help, she turned to me and smiled sweetly, saying,“I can do it myself this time, mama. I'll be OK.”

As parents, we often find ourselves moving towards milestones--- waiting for that first smile, that first sweet sound of our babies' voices, that first wobbly step. The first tiny move towards independence! As parents of children diagnosed with FPIES, milestones often take on a different meaning. We learn to celebrate the “ordinary moments” as extraordinary milestones-- a first food after months of reactions, a new texture that is finally tolerated, that first shared family meal.

Five incredible years have passed since The FPIES Foundation incorporated. Five years of meeting new families, hearing of heartaches and victories, struggles and successes. Five years of meeting and partnering with compassionate and caring medical professionals, expanding medical education resources, and lighting the flame of awareness in places where FPIES was once unheard of. This has been a monumental five years, and what has made it so monumental has been sharing in this journey and these milestones together.

You were with us when we took our first step on August 31, 2011, launching The FPIES Foundation and debuting our website. You were with us, empowering other families day after day, year after year, to find their voices through our toolbox and resources. You were with us, advocating for other families as you shared your own families' inspiring stories. And you are with us today, ensuring The FPIES Foundation continues to be a home for resources, support, and advocacy. This is the house that awareness built, with an incredibly strong community at the core of its Foundation.

From our beginnings, we have dedicated ourselves to overcoming the challenges of FPIES by offering tools for education, support and advocacy to empower families and the medical community. In the ordinary, daily life with FPIES, we have found extraordinary connections. We look to the future as we continue to invest in education, awareness, research and support for all affected individuals, their families and the medical professionals that serve them. Together, we will continue to be the Voice for all those affected by FPIES worldwide; together, we will continue to take big steps for the smallest of patients. Thank you for helping us build the Foundation together--- yesterday, today and tomorrow!

When Life Hits the Fan

When Life Hits the Fan

A guest post by Honor Genetski

I've been getting my share of lessons in acceptance lately. I choose to see it this way rather than as a run of bad luck because without fail I am more grateful, more clear-seeing, and more resourced on the other side of these stretches. When it's happening I obviously just want it all to go away. 

It started a few months ago when Lemon caught a stomach bug. It hit her hard, but I thought after a few days of gut rest she'd be back to her normal cheery self. Instead her entire system unraveled and she lost the ability to digest anything. She survived on broth for another month while we waited for this monster to run its course. It was a lot of waiting in the dark.

When Lemon gets sick no one knows what's happening. This time after lab work ruled out a few common bacteria and parasites, I was told by her pediatrician that she would defer to me since I was the expert on my daughter's health. I sat with these words for a minute unsure if that was actually a good thing in this case. 

There really isn't a net to catch this child when she falls. I hold her on the way down and we fall together. 

It has me thinking about how we all find ourselves in the depths at one time or another and have to find a way through. Holding healing for yourself or for someone you love is a commitment to staying present with fear, exhaustion, and every joyous gain. It's allowing yourself to be right where you are with the tools you've got.

And rock-bottom serves its purpose in that it's a place to take inventory on what is and isn't working, and to resource for the next steps.

The following ideas are some of my most tried and true methods for navigating the deep and making my way back home again. Hopefully they will help you too the next time life hits the fan in your house.

~ Feel your feet connecting with the earth. This is the most immediate kind of grounding work and can be done anywhere, anytime. There is only so much freaking out you can do while your focus is on your feet.

~ Practice gratitude about anything and everything. Say it out loud. This is life-changing work because it makes acceptance of what is feel bigger.

~ Ask for what you need (or want) from your partner, spouse, friend, and extended family. Don't expect them to know until you verbalize it.

~ Explore more forms of support than you think you need (support groups, therapy, friend time, exercise). 

~ Connect with resources that align with your values – make sure it’s a right fit. If it isn't, allow yourself to explore other options. 

~ Create a space to be with yourself. Choose a place where you feel connected with something bigger than you. Church, yoga, a meditation circle, standing in the forest, or immersing in water. 

~ Some days collapse is a necessary and logical response to what life brings. Go there and find the gem of stillness buried inside. When you feel ready get up and start again.

Honor is a Marriage and Family Therapist, and mom to a child with FPIES.  Honor follows her intuition and hope in the quest for healing on Therapist Mama. where this blog post originally appeared.  It is shared here with permission.  

An Interview with "No Tube"

What can you tell me about NoTube Organization?

NoTube supports families with children with tube dependency, working with the "Graz model of tube weaning".

We help children who are "stuck" on a feeding tube in absence of a medical need for it. Although the children are able to eat from a physiological point of view, they show signs of oral aversion and food refusal. We help them overcome this obstacle and finally be able to eat orally and sustain their nutritional needs. Furthermore, we help all children with early eating behavior disorders, such as selective eating disorder, infantile anorexia...

Where are you located?

The LLC is located in Switzerland and Austria. We offer online options (so families from all over the world can reach us without the need of travelling long distances, which is a big advantage for medically fragile children) as well as onsite options in different countries all over Europe. Our EAT Campus will be open in April 2016, in Graz, Styria!

Who is on your team?

We have an interdisciplinary team consisting of:

·         Pediatricians (Marguerite Dunitz-Scheer and Prof Scheer have developed the Graz model of tube weaning, they have weaned thousands of children)

·         Psychotherapists,

·         Clinical Psychologists (Sabine and Karoline are also Dr in Medical Sciences and have published a lot on the themes of tube feeding and weaning)

·         Physiotherapist (Eva. who looks back on 25 years of working with children with eating disorders)

·         Music Therapist (Birgit, who is also a social pedagogue and is quite experienced in her work with special needs children) ,

·         Psychosocial counselor

·         Non-medical professionals (marketing, financial department, IT...)

What made you develop an organization for No Tubes?

Our program "Graz model of tube weaning" has been developed and evaluated in the University Children's Hospital of Graz. Due to the increased number of interested families from all over the world, we wanted to offer services in order to help all these families adequately. We are absolutely not against feeding tubes and know that they fulfill a life-sustaining function. But when it comes to the weaning phase, not many professionals are trained and interested, so many children stay stuck on a feeding tube in absence of medical needs for it. These are the children we want to help. As said, we also offer feeding therapy for children with other early eating disorders.

How do you offer help?

Online: 

1. Tube weaning via Netcoaching - treatment via as specialized online platform, standardized protocol of reducing tube feeds, daily contact to our experts including messages, video analysis, weight and intake evaluation. This helps children who are medically fragile as there is no need to travel; furthermore the family saves the whole travel costs and stays home in its familiar environment. Over 90% of all children participating can be weaned completely off their feeding tubes! There is no duration limit, we treat the child until it has reached his/her full potential.
2. "Learn to eat" program - online coaching for children with all kinds of early eating disorders

Onsite:

1. Eating Schools in our EAT Campus in Graz: 2 weeks intensive support onsite by our interdisciplinary team in addition to the Netcoaching!
2. Play picnics: all over Europe, to get in touch with our philosophy and programs, our team members currently travel to different locations in France, Sweden, the Netherlands, Great Britain, Switzerland and are willing to come to other countries if wished.
3. Home visits by our medical experts for children with tube dependency and early eating disorders in order to help the family’s onsite.

Can you give some examples of how you have helped?

We treat children with different underlying medical diagnoses: extreme prematurity or birth complications, heart defects, metabolic diseases, malformations or diseases of gastrointestinal tract, genetic syndromes, psychosomatic/psychiatric diseases, neurological diseases, oncological diseases, renal diseases... who suffer from tube dependency. Furthermore, we work with children with different kinds of eating disorders such as highly selective eating, infantile anorexia, eating disorders in children with autism...

Please have a look at our patient's testimonials: :https://www.notube.com/tube-weaning-success-stories 

How do you think your organization can help children living with FPIES and feeding tubes? Also, how can you help families looking to avoid the necessary placement of a tube?

Before tube placement, we could evaluate the current nutritional state and situation with the doctors onsite and give specialized advice and help with the decision about tube feeding and support children during the phase of tube feeding or to help optimize the nutrition in case a feeding tube can be avoided from a medical point of view. For children who got tube dependent we can help with weaning keeping the special situation of FPIES patients in mind.

This post is a written interview with NoTube and The FPIES Foundation Executive Directors.  

Be the VOICE of Education for those living with Food Protein-Induced Enterocolitis Syndrome on Global FPIES Day!

According to the FPIES Global Patient Registry, caregivers/patients report an average of 1-5 months, with several families taking up to a year, for a child to receive an FPIES diagnosis.  A year to diagnosis. A year of experiencing symptoms and reactions. A year looking for answers and support. The FPIES Foundation is working to change that.  We give more children, affected individuals, and their families help and support when we educate people everyday about the diagnosis.

This is where you come in. 

As we celebrate Global FPIES Day on Wednesday October 14^th; we want you to talk to your family, friends, caregivers, healthcare providers, daycare's, schools, and more about FPIES. Teach them the about the diagnosis. Don't know how to start the conversation? We can help! Don’t know what to share?  We can help!

And then, join us at www.fpiesday.com for our Global Day Virtual Online Interactive Community Event and find new resources and support for you and for you to share!

Also, don’t forget to register and complete the surveys on the FPIES Global Patient Registry! This is your chance to make an impact on the FPIES diagnosis. What better time to start than on Global FPIES Day? 

If you love our work then tell the world! It’s easy and only takes 3 minutes! Go here to get started! http://greatnonprofits.org/reviews/write/the-fpies-foundation

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

August 2014- August 2015: Our Fourth Year in Review

Over the last four years, we have watched our little ones grow right alongside the Foundation. So many of the new families we “met” after our founding now contact us with their inspirational stories--  we proudly hear the stories of children outgrowing FPIES and the stories of children thriving in the face of this diagnosis and learning to self-advocate. The hallmark of these past four years has clearly been connection, and here at the FPIES Foundation, we are so honored to be a part of your family's journey. As we move into our fifth year together, we strive to maintain our connections and to provide all members of this remarkable community with even more tools, resources and sources of empowerment.

So, what have we been up to since last August? We focused on:

Empowerment

• Partnering with ThriveRx to bring families the webinar “Advocating for your Child in the healthcare system”,
• Providing Helpful Tools to start the conversation about FPIES, and advocate for greater awareness
• Making raising awareness easy with our expanding page of printable fliers
• Helping families to be prepared with a few quick and simple ways to share awareness, “31 ways in 31 days” for Food Allergy Awareness Month
• Highlighting what “FPIES in a word” means for families living with the diagnosis

• Spreading the awareness on the first-ever Global FPIES Day on Oct. 14, 2014
• Sharing info graphics created just for spreading awareness via social media or in print FPIES: Simple Words, Complex Diagnosis
• Sharing tools for FPIES management:

• Single-page action plan:  Download, print, and connect with your child’s doctor today to work out the details. 
• How to identify shock, our ‎FPIES Medical experts break down the critical symptoms you need to look for. 
• Emergency Care! From action plans to ER letters, our website has everything you need in one convenient location.
• Nutritional Resources for Families, a newly released webpage to support nutritional management
• Nutritional Resources for Professionals, a newly released webpage designed specifically for nutrition professionals who support children affected by FPIES and their families

• Expanding tools for daily  life with FPIES:
• “Someone's in the Kitchen with ‪‎FPIES”  offers a go-to resource for recipes and cooking tips.
  
• Share your family favorites!, families help families  by sharing what products they use regularly or have discovered!
• Food Journals-- “one size fits all” does not always apply to FPIES. A mom shared one approach, that caught the attention of her doctors, in this blog 

Building Global Awareness and Resources by:

• Proclaiming October 14th to be recognized as Global FPIES Day.
  
• Joining forces with Rare Diseases Community and Global Genes  for amazing resources to help FPIES families for Rare Disease Day and every day!
• Providing informational and awareness packets, available in PDF format to view, download and print, on the new Global FPIES Day page!
• Translating FPIES– SEIPA Información en español! A global need for FPIES awareness is clear. These community awareness cards, translated into Spanish, expand the reach of FPIES education. Download in English and en Español from our awareness flyer bulletin board!
  
• Surveying families about the gastrointestinal impact of FPIES through the FPIES Global Registry.
• Supporting the growth of FPIES advocacy organizations, worldwide 

Education Initiatives:

• Providing families with FPIES information at community events, such as Boston's Franklin Park Zoo, Boston FARE Walk 2014, and FASGMHN Food Allergy Resource Fair
• Fostering online awareness events, such as our “Be the Voice,” “FPIES in a Word,” and the “FPIES Recipe Challenge” campaigns
• Sending FPIES awareness packets to families for ‎FPIES resources at their fingertips (contact us today for your packet!) 

• Participation in Several Awareness Days throughout the year, such as:


• Feeding Tube Awareness Week 
• 'We are #‎FPIES. We are the #‎1in10' photo album online campaign for Rare Disease Day 2015; putting a face on the 1 in 10 people worldwide that suffer from some type of Rare Disease. 
• Food Allergy Awareness Week 2015. We participated in several awareness activities including a photo album, inspired by our community, that shares pictures and corresponding words illustrating life with Food Protein Induced Enterocolitis Syndrome. .
• May 4^th was recognized in the US as a day during Food Allergy Action Month for raising ‎FPIES awareness.  Families were encouraged to raise awareness and get the conversation started with their social media accounts-- #‎AskMeAboutFPIES
• In March, for National Nutrition Month, we asked Bailey
  
  Koch, RD, CSP, LD of our Medical Advisory Board to come up with some essential nutrition tips and recommendations geared towards FPIES families.
• Debuting at Community and Scientific Events such as: 
• The Annual NASPGHAN conference, a conference for Pediatric GI health professionals that includes Physicians, Physicians Assistants, Nurses and Dietitians, providing FPIES materials to these health practitioners vital to our children’s medical care.
  


• The FARE Walk in Boston.  Amanda LeFew, Co-Director of The FPIES Foundation, greeted families,  FPIES Foundation Panel Member, Victoria Warren, Emceed, and Medical Advisory Board Members Dr. Lee, Dr.Yuan, and Dr.Shreffler were in attendance. A large meet-up of FPIES Families was celebrated!

As we look to another year ahead, we are so grateful for how much growth we have seen in the FPIES community over the years. We are humbled that all of you have shared in this journey and will hopefully remain actively involved in the years to come. It is because of your support that The FPIES Foundation has been honored, yet again, with a prestigious 2014 Top-Rated Award by GreatNonprofits. We are also proud to have been featured on Rare Disease Day recap from our friends at Global Genes. We would like to send a big thank you to all our families who made sure FPIES had a strong voice on this international day of awareness, and all other days this part year!

In addition to our incredible community of FPIES families, we continue to be amazed at the tireless efforts of our Medical Advisory Board in their advocacy for FPIES and food allergies, not only among families but also among their colleagues.

• Last October, MAB member and Registered Dietitian Bailey Koch spoke at the Pediatric Nutrition Conference of NASPGHAN, educating other professionals about FPIES.
• The Western Society for Allergy, Asthma and Immunology Conference featured a discussion on FPIES, led by Dr. Glenn Furuta of our Medical Advisory Board, looking at the goals of the gastroenterologist in regards to FPIES care.
• Dr. J. Andrew Bird of our Medical Advisory Board details the newly released FPIES survey discussed at the recent AAAAI meeting. The discussion focuses on gaps in the diagnosis and management of FPIES. 
• ‪FPIES Foundation Medical Adviser Dr. Qian Yuan, a Pediatric Gastroenterologist with Mass General Hospital, released a new children's book: “Macaroni Isn't the Same Without Cheese.” It's written to help school age children understand EoE - a message that applies to kids living with FPIES, too.

Families, supportive medical professionals, and the amazingly strong infants and children we all support continue to fuel the passion of The FPIES Foundation, every day, every year. Together, small shoes CAN take big steps towards awareness, support and advocacy.

If you would like to learn more about our activities, be sure to check out our annual reports and current events pages! If you would like to learn how you can make a greater impact, contact us today for information about volunteering and special partnerships. Join us as we continue to connect, support and empower for many years to come.

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