Global FPIES Day 2017: Steps4FPIES

We thank you for making every step count by joining with us in our ongoing efforts to build awareness, increase support and advance research for individuals affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) for our 4th annual Global FPIES Day. 

This Global FPIES Day, we witnessed so many #Steps4FPIES! Whether it was through sharing your story with us and in your communities or changing your profile picture to build awareness, you helped to reach out and “start the conversation.” In writing blogs, contacting local media, hosting events or distributing FPIES informational resources to increase education, all of your efforts were an inspiration! Every voice matters, every experience shared today makes a difference for tomorrow.  

If you have not already done so, be sure to watch and share FPIES Myths, the newest FPIES awareness video given to this community by FPIES moms and volunteers Heather Martin, Jackie Morrow.  We thank Heather and Jackie and all those involved for their time and talents contributed to the making of this video.  

We were thrilled to hear a research update from Dr. Jeanelle Boyer, FPIES mom and researcher at Keene State College who is actively doing research on FPIES and the microbiome. Be sure to tune in to our youtube channel and get the updates on her research!

And, of course we are grateful to those listed below and to all who partnered with us to further the reach of awareness.

• Allergy and Immunology Foundation Australia (AIFA)
• My Kids Food Allergies
• CMNuA
• Feeding Tube Awareness
• SEIPA Quebec
• AusEE
• Allergy Punk
• Sarah’s FPIES Clubhouse
• Food Allergy and FPIES Mommy
• Kuhmilchallergie
• Neocate Nutricia
• No Biggie Bunch
• Hopecentric  
• NeedyMeds
• Allergy Superhero’s
• Turn it Teal
• Big Little Mommy
• TravelinFabFive
• Global Genes 

The need for awareness among providers and in our communities, alongside advancements in researching mechanisms, remains essential to continually building an increased understanding of this diagnosis and support for those affected by it. We remain committed to this work and we thank you for your support!

This post written by Joy Meyer, Co-Director/Co-Founder of The FPIES Foundation. 

10 Things You Can Do to Spark the Conversation About Rare Diseases

The FPIES Foundation has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

For this 10th Rare Disease Day, we compiled a list of our top 10 things you can do to help spread awareness this Rare Diseases Day: 

#1. Share a Rare Disease Fact on social media. 

#2. Print and color a rare disease day coloring page and share it with facts about FPIES in your community or on social media. 

• Visit Awareness Critters.com to download your kid friendly coloring page. 
• Visit RareDiseaseday.org to download your "Handprints Across America" coloring page.  

#3. Share a medical journal article on FPIES research from our Medical Literature page. 

#4. Change your profile and banner pictures on social media to show your support. 

• Rare Disease Day.US Twibbon profile picture
• Global Genes "Care About Rare" 
• NORD "With Research Possibilities are Limitless" & "Handprints Across America" 
• Awareness Critters 

#5. Challenge family and friends to join in raising awareness and share our “FPIES: Now you Know video”.

#6. Learn and share about the importance of patient registries and their role in  the advancement of understanding of rare disease with our "FPIES At a Crossroads" Global FPIES Day webinar. 

#7. Host an awareness event in your community. Not sure where to start?  

• Print and share awareness materials.  
• Check our out Awareness & Fundraising Events webpage and, 
• Watch our "Creating an FPIES Resource Table for your Awareness Event" webinar. 

#8. Tell Your Story

• Send a letter to the press utilzing the "Sample Press Release Patient Story" template from RareDiseaseDay.us
• Send us your story to be published on our Inspiring Families webpage
• See, watch and read stories and submit your own to Rare Disease Day for publication. 

#9.Share The Mighty's “19 Secrets Families with FPIES Wish Others Knew" 

#10.  Follow us on social media for our daily updates on staying involved!   

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org and www.globalgenes.org.  

This post was written by the FPIES Foundation Board.  

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!

FPIES Trends and Insights from the Patient Registry

FPIES Trends and Insights: 
Caregiver/Patient Reported Data from the Global Patient Registry 
By Hilary Lagerwey 

For four years now we have been working on collecting data from FPIES patients across the world using our Global Patient Registry from Patient Crossroads, a leading registry platform among rare diagnosis.

First of all, we want to say a big thank you to those who have already filled out the survey with valuable information!  There are several good studies out there describing what FPIES looks like, and our goal is to supplement that research with up to date information gathered from an even larger pool of families that we are able to reach using this tool. We hope that this information proves immediately valuable to families and doctors who are managing this diagnosis on a daily basis. We also hope to provide some insights to researchers that might prompt further study.

Anyone who fills out the survey has access to all of the cumulative data so feel free to browse and analyze for yourself, but today, in honor of Global FPIES Day this month (Oct.14th!) we thought we would share some of the insights we’ve gleaned so far. We recognize that since we are collecting data by voluntary responses some of our information may look skewed as compared to a more random sample; however we know that these results are important to share and that they represent a significant portion of FPIES families.

If you haven’t filled out the survey yet, please do so! The more data we have the more we can learn. The more information we can give to doctors and researchers, the more we can advance research to benefit all families living with FPIES.  Here is a look at what our data says about some frequently asked questions:

Do FPIES symptoms typically appear with the introduction of solid foods and formula or is it possible to react through breast milk?

57.4% of survey respondents reported exclusive breastfeeding when symptoms began.

Is FPIES typically outgrown in early childhood?

Out of patients 3 or older in our survey data, 15.8% report outgrowing acute reactions. 1 patient reported is under 3 and reported already outgrowing acute reactions. Several patients well into their elementary school years state that they still have not outgrown acute reactions.

*Also out of patients 3 or older, 15.8% report outgrowing chronic reactions.

50% of those who report outgrowing acute reactions report still experiencing GI symptoms with previously reactive foods.

Do most kids only react to one or a few foods?

Out of those who report projectile vomiting with reactions, 51.9% stated this occurs with only 1 or 2 triggers vs. 48.1% who stated they experience projectile vomiting with more than 2 triggers.

26.9 report projectile vomiting with 5 or more triggers.

What symptoms are common with reactions?

81.3% report projectile vomiting

65.6% report diarrhea

48.4% report visible and/or occult blood with stool

Thank you to FPIES Mom and FPIES Foundation volunteer, Hilary Lagerwey for compiling this survey data. 

Graphic created by FPIES Mom and FPIES Foundation volunteer, Melissa Rice 

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 

Building FPIES Awareness through Fundraising and Events

Over the last year we have been inspired by the impact of your unique talents and hard work as you continue building awareness to FPIES.   As we approach our 2^nd annual Global Day, we wish to share some of these events with everyone, in hopes to inspire you, that you too can make a difference.  “Our shoes may be small but our steps will be BIG!”

FPIES families have always been creative, including in how they raise awareness and fund-raise! We have had several moms using  Jamberry fundraisers, and even a couple of these moms designed the nail wraps themselves to feature FPIES awareness art. Awareness from fingers to toes! Other moms have designed T-shirts and other awareness gear to raise funds to further FPIES education and awareness. Their creativity has helped fund programs to educate medical professionals about FPIES. We want to give special shout-outs to Jessie Ipson Richens, Kate Hutchens, Crystal Lentz, Brandi of Glam Tots, Rosie's Creations, and Half Pint Threads!

Restaurants have joined in the cause, sponsoring family nights and awareness days where they donate a certain percentage of sales to The FPIES Foundation. We were touched to see photos from Jersey Mike's Subs-- a visual reminder of how communities are really joining in the cause and reaching out to support  FPIES awareness. The families initiating these fundraisers and the restaurants partnering in the cause have helped to fund programs providing resources and support to families worldwide. Special recognition for Luca's family for all of their support!

In every fundraiser and in every awareness event, families put their own unique stamp on the day.  Just as each child is unique, each family-organized event has its own special style. The Fangman Family, for instance, raises awareness at Drag Races and Mud Runs!  Samantha Fangman shares, “Our daughter, Josie, has FPIES. My husband had decals made for his race-car with the FPIES logo. We have brochures printed that we hand out at all our races. We were amazed how many people came up and asked us what FPIES and The FPIES Foundation was at our first race. We’ve handed out many more brochures than we anticipated and are thrilled about it!!! We are doing what we can to get the word out!!“

If you are thinking about starting your own awareness event or fundraiser for the FPIES Foundation, we hope that you have found inspiration in the stories of the families highlighted above--- we certainly are inspired by all of them, and all of you, everyday as we continue working to fulfill the FPIES Foundation's mission of education, support and advocacy for all those affected by FPIES, worldwide. 

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 

FPIES: Simple Words, Complex Realities

FPIES: Simple Words, Complex Realities

By Nichole L. Huff, Ph.D., CFLE

One evening last week, in reviewing the papers sent home in my kindergartener’s daily folder, I noticed a flyer for a school fundraiser. An ice cream social. On Friday my son could have a big scoop of ice cream from a variety of flavors, and could even top it off with his choice of sundae toppings. A simple flyer; a simple event. A good cause even, as the profits were to support overseas relief and education efforts. But to me, an FPIES Mommy, this flyer, fundraiser, and event were anything but simple.

No, this represented one more thing in which my son couldn’t participate. My 5-year-old, acute FPIES to milk proteins (with life-threatening vomit-to-shock reactions since birth), could not have his choice of ice cream flavors. He couldn’t add whipped cream and syrup and sprinkle it with candy toppings. Instead, because this event like so many others centered on food… he could not readily be a part of it.

A simple event yes, but a complex reality for our son.

The truth is, our reality is complex. My son has a special need. His need doesn’t involve physical, social, or learning accommodations; instead, his need requires dietary considerations. And that’s pretty complex given we live in a society focused on food. Fundraisers, potlucks, receptions, parties, dinners, birthdays, holidays—food is always involved. But for us (like other FPIES families), when food is involved, our child is often left out.

Thankfully Friday has come and gone. To address the fundraiser, I did what any FPIES Parent would do. What we do day-in and day-out. I took a deep breath and turned to my son, who was finishing his homework at the kitchen table. I held up the flyer and said, “Hey, buddy, did you know they are having an ice cream fundraiser at school this week?” As he nodded, face solemn, I continued, “Well, Mommy will send in a bowl of your ice cream on Friday. I’ll send a note for your teacher to keep it in the freezer until the fundraiser starts. That way, you’ll have a big bowl of ice cream to eat too. Will that be okay?” He paused and grinned, his face revealing an expression of relief, knowing that now he’d also be able to join in the fun.

And then, as I turned back to his folder, I wiped a silent, solitary, simple tear from my cheek.

I know I’m not alone. For other parents like me who manage a child’s special need, whether related to food or anything else, we are the simple champions fighting what often seems like a lonely, complex battle on behalf of our children. In reflecting on the FPIES in a Word campaign, I realize that words like frustrating, emotional, challenging, misunderstood, scary, and stressful quickly come to mind. As we recognize Food Allergy Action month, however, I invite you celebrate the other words that describe our journeys. We are Advocates. Educators. Protectors. We are Problem-Solvers. Normalizers. Navigators. We are Creative. Resourceful. Flexible. We are Strong. Hopeful. Determined. In a word? We are FPIES Parents: simplifying the day-to-day management of our children’s complex diagnoses.

As the parent of a son with FPIES, Dr. Nichole 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 (CFLE) 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 maintains a parenting blog at http://soapboxmommy.com/ 

Food Allergy Action Month 2015

Food Allergy Awareness Week (May 10-16th) has recently been expanded to include FoodAllergy ACTION month.  Plus, this year a National FPIES day on May 4th has been included to honor the month of Allergy Awareness. National FPIES Day is in addition to Global FPIES Day, on Oct.14th, established by The Foundation in 2014.  Two days to build further awareness to those living with FPIES!

We know that raising awareness happens every day for a family living with FPIES.  During these days of Food Allergy Action Month, we want to help you be prepared with a few quick and simple ways to share your awareness. We introduce “31 ways in 31 days” : 

1. Awareness IS Action! Start a Conversation today. 
2. Download and distribute “About FPIES” in your community – online and in person!   
3. Share our “Have You Heard postcard”
   
            
4. Visit our FPIES Awareness page to print community awareness cards, rack cards, flyers and more to distribute to teachers, doctors, schools, and providers.
5. Organize an FPIES Recipe Challenge  
6. Change your social media banner or profile picture to “FPIES in a Word” and invite your family and friends to learn what it is like living with FPIES, #AskMeAboutFPIES 
   
   
7. Share our YouTube videos
8. Receive a packet of preprinted awareness materials to distribute in your community. Write to: contact@thefpiesfoundation.org 
9. Share your favorite recipes that you use to cook for your child with FPIES on the Foundation forum. 
10. Color an “FPIES is Rough, But I am Strong” mini book with your child 
11. Have a packet of awareness and educational materials sent to a provider or hospital, simply send us the name/address of where you would like it sent- we’ll do the rest! contact@thefpiesfoundation.org
12. Add the Foundation Support button to your blog or profile pictures.
13. Submit YOUR inspiring story to us at: contact@thefpiesfoundation.org
14. Share the FPIES Q&A page in your online social networks 
15. Learn new ways of becoming an advocate 
16. Contact the local news media and share your story 
17. Share our Label Reading tutorial with new parents in your support groups 
18. Learn and share new cooking tips in our Cooking and Nutrition pages
19. Link to a new resource 
20. Read and share “How to Help an Family Today” 
21. Listen to the Recording: "Advocating for your Child in the Healthcare System” A joint webinar from ThriveRx and The FPIESFoundation 
22. Print and share the “FPIES-at-a-glance Awareness rack card”
    
23. Wear your favorite FPIES awareness gear to spread awareness FPIES. 
24. Design an FPIES awareness poster with your kids to share with their pediatrician's office, take  picture, and share it with us! Kids in Action
25. Talk to a parents' group about your family's experience with FPIES.               
26. Coordinate an Awareness Event!
27. Host a Fundraiser Event!
28. Connect to research on the Global FPIES Patient Registry 
29. Learn updates to the research through Medical Journal Articles 
30. Support our mission of providing education, support and advocacy to families and medical providers and donate today. 
31. Follow our Website, Facebook, Blog, and Twitter for ongoing updates throughout the month!

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