News & Events 2016 

Dec. 31, 2016: Powerful voices! This story submitted by an FPIES family to The Mighty is one of their most-shared stories of the year! 
 200px-hon_logo_08 Nov. 28, 2016: The FPIES Foundation has been granted renewal of our HON (Health on the Net) certification. Medical Information you can trust!
 16265504_1480167437-9073 Nov. 26, 2016: A close friend of this FPIES family in need started a GoFundMe page and has this to share, “I know we are close to Christmas and money is tight for everyone but every little dime counts to help this family during this difficult emotional and financial time. Thank you for your time and generosity!”   
teal-mice-ac  Nov. 22, 2016: ” My hope for these Awareness Critters is that they bring awareness to families and individuals struggling with Rare and hard issues” Learn the inspiration behind Awareness Critters!  
 14947443_1294491177262292_8689101784089687537_n Nov. 21, 2016: AltaVoice (formally Patient Crossroads) shares insights gained through the Patient Insights Network (PIN) from the FPIES Registry
 cures-logos Nov. 21, 2016: Rare Diseases Unite! Take action this week to support the 21st Century Cures Act!  
Newspaper Image ID 18062768 (L)

Nov. 17, 2016: FPIES and MCAS – a family shares their story about their journey battling two rare conditions. News story at Channel 4 Click Detroit

14563456_10154613261466079_5942540769257987977_n Nov. 14, 2016: 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! 
 11038105_462415980572821_6060201348643508515_n Nov. 12, 2016: We’re partnering with The Mighty! We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty’s wide-reaching readership. You can now find FPIES resources linked to our page on The Mighty.
 orange gradient donate button Nov. 4, 2016: October was a huge month for us! We attended the World Pediatric Gastroenterology (NASPGHAN) conference, unveiled several new FPIES education videos, hosted a Twitter Chat and a webinar and celebrated our 3rd annual Global FPIES Day. In all the excitement we had several families organize fundraisers and make donations. We want to thank each and everyone of you. Your money helps fund research, educate providers and support families just starting this journey. No amount is too small and we are honored with the trust you place in us 
 teal-mice-ac Oct. 20, 2016: FPIES Mom and artist Brittany Huston has created a line of illustrations linked to special needs and rare conditions. Each Critter is linked with a different organization, foundation, or charity and 10% of the profits for each sale go to that organization to help them continue to raise awareness! Brittany has honored The FPIES Foundation with linking us to an illustration called Teal Mice.  To learn more about the story of The Awareness Critters and order yours today, please visit her website: Awareness Critters.
 2016-top-rated-awards-badge-embed Oct. 19, 2016: We have been honored with one of the first Top-Rated Awards of 2016 from GreatNonprofits! We appreciate all of your contributions!
 Hands forming words "Thank you" with jigsaw puzzle pieces isolated October 17, 2016: From the bottom of our hearts thank you for an amazing Global FPIES Day. It was empowering, successful and fun. There was so much offered it was hard to keep up. Be sure to check for anything you might have missed.
  October 14, 2016: Debuting The Online Learning Library page of our website! The Online Learning Library is a collection of multimedia resources to encourage the growth of awareness and education among medical professionals, families, and the communities that support individuals affected by FPIES.
 fpies-nutrition-care-plan-worksheet-pg-4jpg  October 14 2016: Proud to add these FPIES Nutrition Worksheets to the Nutrition resources. These worksheets are designed to compliment the FPIES Nutrition Webinar for Nutrition Professionals on Oct. 25th.
 calm-kit-video-image October 14, 2016: “Creating Calm“, in this “parent-to-parent” video, Amanda LeFew takes families through the process of building and implementing calm kits in order to foster coping skills for their children.
 cam02538 October 14, 2016: Creating an FPIES Resource Table for Your Awareness Events.” Have you ever wondered the ins and outs of creating an FPIES resource table for your next awareness event? FPIES Foundation Co-Founder and Co-Executive Director, Amanda LeFew, guides you through the basic steps you need to follow to get started.
 making-seed-milk October 14, 2016:  Making Hemp Milk” a parent-to-parent tutorial from Joy Meyer, Co-Director of The FPIES Foundation.

October 14, 2016: “Self-Care for Parents: Reflections for Caregivers” by Honor Genetski Honor Genetski, MFT, guides parents and caregivers through an exercise in self-care, emphasizing the importance of properly caring for ourselves in order to best care for our children. 

October 14, 2016: “FPIES and the Microbiome: A research update from Dr. Jeanelle Boyer” Dr. Jeanelle Boyer, who is currently researching the microbiome in the gut of infants affected by FPIES 12 months old and younger, gives us an update her intriguing study.

 childrens-med-nutri-alliance-video-2016 October 14, 2016: FPIES and Insurance – Your questions answered in this Global FPIES Day video by our friends at The Children’s Medical Alliance: “Navigating Insurance and Medical Nutrition” discussing the steps of navigating insurance as it pertains to medical nutrition (i.e. elemental formula, tube feeding, etc) and explains how to advocate for your child during this process
 global-day-2016-video-woolfred October 14, 2016: Woolfred Cannot Eat Dandelions – FPIES” Author Claudine Crangle reads the story!!
 global-day-2016-video-patient-crossroads October 14, 2016: How often have you wished doctors could get a “big picture” look at all FPIES patients? With our Global FPIES Patient registry they can. In “FPIES at a Crossroads” Kyle Brown, CEO of Patient Crossroads explains how the FPIES Global Patient Registry can help the medical and patient communities affected by FPIES. Join the registry today:
 global-day-video-nasir October 14, 2016: “Preparing your child for GI tests and procedures”
Dr. Amana Nasir joins us once again this year to speak with families and practitioners about preparing children for various GI procedures and tests with helpful and practical tips!
 fpies-call-out October 14, 2016: Partnering with The Mighty today for FPIES Awareness to honor Global FPIES Day! FPIES Families tell us what is one secret you wish others knew about caring for someone with FPIES?
 14563456_10154613261466079_5942540769257987977_n October 14, 2016: Today is THE day! The third annual Global FPIES Day, a day for bringing families, friends and professionals together in the name of increased awareness of FPIES. has everything you need! “Tools that Build Bridges,” offers presentations tailored to families, communities, medical professionals, and researchers.
 Global Day Frame with Logo 2016 October 11, 2016:Find your 14′ for Global FPIES Day on October 14th!! 14 easy ways to raise awareness and Be the Voice for FPIES.
 14628075_10210814195497572_355474044_n  October 10, 2016: FPIES Mom and LuLaRoe Consultant is honoring Global FPIES Day with an awareness and fundraising event.  Visit her event page on Facebook LLR MultiConsultant Fundraiser to raise money for FPIES Awareness for further details!
 cam02538 October 7, 2016: The FPIES Foundation is at WCPGHAN in Montreal!
World Congress is the largest gathering of pediatric gastroenterologists, hepatologists, research scientists and physician nutritionists.
 global-day-frame-1-2016 October 1, 2016: Be the Voice for FPIES on Oct 14th.  Share your awareness picture as we celebrate the third anniversary of Global FPIES Day.
 14479531_1279567622067700_3671234307393486833_n Sept. 28, 2016:  Your questions about FPIES Emergency Care answered by Medical Board Allergist Dr. Sakina Bajowala, M.D! Join us as we host the first ever #FPIESChat on Twitter and chat live with Dr. Bajowala. Mark your calendars, October 12th 12p CST (1p EST).
 CMNUA_logo Sept. 20, 2016:  Announcing an exciting new partnership for the FPIES Foundation! Read about the great work the Children’s Medical Nutrition Alliance and the important work they do in the fight to get formula coverage for medical needs and in identifying and helping those families who can’t afford the life-saving formula.
global-day-frame-1-2016 Sept. 17, 2016:  Add your picture and share your Global FPIES Day awareness with this social media frame.  Make yours today in Canva!

  1. Open Canva in your web browser or on our iPad app (create an account or log in)
  2. Choose “Create a Design”
  3. Choose “Social Media Graphic”
  4. Scroll down to “Uploads”
  5. Upload the Global Day frame
  6. Upload your images with your personalized photo
  7. Crop/fix your images
  8. Save and share!!
webinar-jpeg-for-sharing with CPE Sept. 16, 2016:  Please join The FPIES Foundation on Tuesday October 25, 2016 for a FREE Nutrition Webinar.  The purpose of this webinar is to aid nutrition professionals by providing nutritional care plan guidelines, expert tips and tools, as well as numerous resources to assist them as they monitor and provide care for their patients living with FPIES. Register here.
 Global Day Frame with Logo 2016 Sept. 1, 2016: Time to gear up for the third official Global FPIES Day, this October 14th! Join us for a day of FREE educational webinars for parents and professionals, and the kids! Stay posted for updates on our partners, presenters, and new tools and resources to help make daily life with FPIES a bit easier!
 FPIES Toolbox Aug. 29, 2016: The House that Awareness BuiltThe FPIES Foundation is proudly celebrating 5 years of supporting the most amazing awe-inspiring families, working with the most talented and dedicated medical professionals and leading important research and global patient registry initiatives. Thank You to everyone who makes our work not only possible, but worth it, every step of the way.
 newsletter button 4 Aug. 24, 2016: Announcing our newest addition!  With much thanks to Taryn Morrissey Buckley, Executive Advisor at Informz and FPIES mom, we proudly introduce the FPIES Community Newsletter.  This initial email series is geared toward the newly diagnosed and will help connect you to the resources you need to navigate your way. Sign up today!
 2016 t-shirt front Aug. 23, 2016: Raise awareness in style with our new Global FPIES Day t-shirts designed by FPIES Mom Jessie Ipson. Limited time sale to assure shipping for Global FPIES Day 2016!
Aug. 18, 2016: Researchers from Japan continue to research markers of the pathogenesis in FPIES. “Serum C-reactive protein in food protein-induced enterocolitis syndrome versus food protein-induced proctocolitis in Japan.
 Kindrdfood-stacked-logo-hi-res300dpi-CMYK Aug. 5, 2016:  Piper’s ‪‎FPIES‬ journey featured on Kindrd Food, “Food: Friend or Foe?”.
 Disney photo submitted by Amanda Carpenter 2016 Aug 1, 2016: “A week of yes’s!” This family caught up in the magic of Disney – sharing this photo where Dad is proudly wearing his FPIES shirt. Mom tells us it was an amazing experience working with chef’s dedicated to keeping her FPIES daughter safe.
 NORD Member Logo July 22, 2016: Together we are strong! The ‪FPIES‬ Foundation is proud to announce we are a member organization with the National Organization for Rare Disorders! ‪‎NORD‬ offers incredible resources by pooling the strength of the Rare Disease community together. ‪
 13043649_1362402343785458_5704191837600495005_n July 21, 2016: Our friends at Global Genes is offering a great webinar on ways to effectively communicate with health care providers. The webinar is Aug 9 at 1pm EST (10am PST).
 cropped zen garden strength rock July 12, 2016:When Life Hits the Fan“.  Beautifully written, essential advice from an ‪‎FPIES‬ mom who has been there. Guest blog by Honor Genetski will help anyone navigating a rare disease.
 kids in action gallery wall July 11, 2016: Kids in Action! This teen wrote an inspiring letter to her State Senator about the importance of Global ‪FPIES‬ Day! Once again proving our kids can be the strongest advocates for awareness.
 10968394_10153120967446079_6722987972780483605_n  June 28, 2016: Resources for Kids: Things to do in the Hospital.  A guest blog post by Zack Skrip gives tips and tricks to helping kids during their hospital stay.
 11038105_462415980572821_6060201348643508515_n June 24, 2016: FPIES Mom Kristine Lukanich shares her story about dining at restaurants with Food Protein Induced Enterocolitis Syndrome and is featured  on The Mighty.
 Ci6wWAxVAAEH9xJ June 3, 2016: Helping Families Navigate the Emergency Room with a Rare Disease.  We highlight topics from our participation in a #RareERChat on Twitter sponsored by NORD and Texas Children’s Hospital.
 13227086_1024567394303625_8778280498525848140_n May 31, 2016: Great books for a great cause! Raising awareness and funds, an FPIES mom sponsors an online Usborne Book Fair to Benefit The FPIES Foundation. A portion of each sale of the award winning Usborne Children’s Books through the month of June will be donated to benefit The FPIES Foundation. If you do not have a Facebook account, you can find her at her direct sale page link.
famember May 26, 2016: The FPIES Foundation is proud to be among the network of rare disease organizations in the Global Genes RARE Foundation Alliance.
Magnifying glass with blue news word May 20, 2016: New ‪‎FPIES‬ Research! A Japanese study looks at inflammation marker (CRP) and fever in relation to FPIES.
 11760125_10153501667460859_8057156498266178693_n May 14, 2016: FPIES‬ in the news: This mom hopes her son grows to advocate for others. “Little Boy with Severe Food Allergies Can Only Tolerate 12 Foods”
 Echo10 May 13, 2016: What does awareness look like? Read one families story of strength and support on the blog: “Miracle of FPIES”.
 REACTmed pro ver4 (1)  May 11, 2016: “React with Respect” . This “REACT” poster, focused on responding to an individual experiencing an FPIES reaction, can help to start the conversation among emergency and other pediatric professionals.
 At A Glance  May 10, 2016: FPIES‬ at a Glance – easy to understand, easy to follow. Keep this handy to share with anyone who needs to learn more about Food Protein Induced Enterocolitis Syndrome.
 A- 10897933_10153120943576079_1181898688312827422_n  May 9, 2016: Proud to debut our 2016 Food Allergy Awareness Video: An Open Letter on how You Can Help an FPIES‬ Family.  Watch and share this video with anyone who wants to help you but just doesn’t know how.
 REACTmed pro ver4 (1)  May 8, 2016: Today is the first day of Food Allergy Awareness Week. This year for Food Allergy Awareness Week, we join in FARE’s call to our communities–“React with Respect”.  Check out our special web page filled with resources to help you raise awareness this week:
 android badge 2  May 4, 2016: Big ‪‎FPIES‬ Community Announcement!! Today is National FPIES Day in the United States and we are so proud on this important awareness raising day to unveil our brand new mobile app! Finally, all our emergency forms, medical information, caregiver information always at your fingertips. It’s easy to navigate and free to download. Currently available for Android. IPhone version coming soon. Download today!
 FPIES SUPERHERO FAAW Big  May 3, 2016: National ‪FPIES‬ Day is May 4th and we celebrate Food Allergy Awareness during the entire month of May. Make your picture on Twibbon then message us pictures of your #FPIES Superheroes and we will celebrate their bravery here!‪#‎FPIESSuperheroes‬
 goldsmith_1 April 30, 2016: Scentsy Fundraiser for FPIES! Support FPIES Awareness while you shop for Scentsy! FPIES Mom and Scentsy consultant is celebrating Allergy Awareness Month by donating profits from her sales to The FPIES Foundation in the month of May!
 12249697_10153601419240380_6455018415548761585_n April 28, 2016: One family speaking out about their FPIES‬ journey: ‘We’re just trying to keep our child alive’ Life with FPIES, an article shared on Essential Baby in November 2014 resonates strong with our community.
Logo FAAW April 26, 2016: FPIES Superheroes Unite! Just in time for Allergy Awareness Month, our customized profile Twibbon is ready to go. This is the easiest way to raise awareness and celebrate our brave FPIES heroes. Show your support here:
 Newspaper Image ID 18062768 (L) April 19, 2016: Celebrating holidays, and medical equipment for Haley who lives with FPIES and ASD in this article “Celebrating FPIES New Equipment makes Haley’s Life Happier“; a continued story to “Life Not So Ordinary” from Jan. 2016.
 12985401_1155867327771064_6145777484276798044_n April 17, 2016: 5 year old boy shows age doesn’t matter when it comes to making a BIG difference! This guy ran a lemonade stand to raise money for the FPIES Foundation in honor of his little sister who has an FPIES diagnosis! So thankful for amazing, fabulous and supportive families like this one. An inspiration to all!!
 Newspaper Image ID 18062768 (L)  April 14, 2016: Awareness raised this week in Australia.  Thanks to our friends at FPIES Australia for sharing this story, “My 13 month old baby is allergic to ALL food” by Ruth Devine featured on Kidspot.
Volunteer Thank you April 13, 2106: It’s National Volunteer Week. We are a Foundation of Volunteers! From our Executive Board to our Medical Advisors, to the countless FPIES‬ families who give so much while managing their own child’s challenges – we thank you! Learn more about our volunteers here and email us at if you’d like to volunteer with us.
KSC  March 29, 2016: FPIES Study! The FPIES‬ Foundation is proud to help fund this important study looking at gut health as it relates to FPIES. They are looking for study participants. Read the full press release from PRWEB.
FPIES Uk March 14, 2016: New ‪‎FPIES‬ Awareness poster from our friends at FPIES UK!
Food plate icon orange glossy round button March 10, 2016: March is National Nutrition Month! Proper nutrition with an FPIES‬ diagnosis is not always easy. Our nutrition pages are a great resource for growth charts, calorie counters, nutrition fact charts and a whole lot more.
FPIES at AAAAI Dr Bajowala 1 of 3 March 9, 2016: FPIES‬ was part of the discussion at this year’s American Academy of Allergy, Asthma and Immunology conference. Dr. Sakina Bajowala, FPIES Foundation Medical Advisor, provided detailed updates on Twitter.  Follow Dr. Bajowala @allergistmommy. Follow FPIES Foundation @fpiesfoundation.
FPIES at a Glance French pg.1 Feb. 29, 2016: FPIES information translated in French!  In honor of Rare Disease Day, we bring you our latest in global awareness and support.
 Final Cheecha Logo (2) Feb. 25, 2016: Thank you to our friends at CheeCha Puffs for making an allergy friendly snack food while building awareness of FPIES!  Read their blog post: “FPIES: One Big Reason We Do What We Do”.
12744428_1115176991840098_8083779490378215428_n Feb. 24, 2016: Raise your hands for Rare‬, Care about Rare, and Be the Voice‬ with us as we raise FPIES awareness on Rare Diseases Day. We invite you to message us your awareness photos and we will include them in our social media campaign to raise FPIES awareness during Rare Diseases Day Feb 29, 2016.
 10406539_1303383209687372_2321712657553217946_n Feb. 22, 2016: A message from our friends at Global Genes: “Looking for a way to be involved in ‪#‎WRDD2016‬?! An effective & simple way to ‪#‎advocate‬ Is to share on ‪#‎socialmedia‬! ‪#‎SHARE‬ an awareness post with some ‪#‎RARE‬ facts found here: and you are‪#‎CaringAboutRARE‬! #WRDD2016 ‪#‎CareAboutRARE‬ 350 million people worldwide have a ‪#‎raredisease‬ be an advocate for RARE!
 tara_mccarthy Feb. 19, 2016: Tara McCarthy, Dietitian and member of our Medical Advisory Board, shares her dedication to her clients in her “Walk a Mile in My Clients Shoes” Challenge.
 wrdd-2016-care  Feb. 15, 2016:Rare Disease Day is 2 weeks away! Create a Conversation about ‪‎FPIES‬, a rare food allergy.
 Sam feeding tube awareness Feb. 1, 2016: Tube Feeding Awareness Week is Feb. 7-13th, 2016.  Show love and support for children living with FPIES who are tube fed.  Visit Feeding Tube Awareness Foundation and download awareness materials and build awareness,  share on social media, or change your profile picture.  If you’d like your own personalized profile photo follow this link. 
 10947295_1040508385974857_6530936731706642735_n Jan. 27, 2016: Looking ahead to Rare Diseases Day Feb 29th 2016! Global Genes is once again holding their virtual 5k. Stand with the Rare community and lend power to your voice!
 booklet Jan. 30, 2016:  Sales have started for our BonTon Fundraiser! Purchase booklets online and help us reach our goal! Receive free shipping on coupon booklets and best of all, 100% of the proceeds go to benefit  The FPIES Foundation!
 DSCN9231 Jan. 25, 2016: Every doctor in The FPIES‬ Foundation provider database now has resource packets available for FPIES families. Contact your doctor for one or contact us directly and we will send you one. If your doctor isn’t part of our provider database encourage them to contact us so they don’t miss the latest FPIES Foundation awareness/education tools.
 tara_mccarthy Jan. 20, 2016: On the FPIES‬ blog: Sitting Down with Kindrdfood.  FPIES Dietitian co-founds a new company Kindrd Food. They offer custom dietary guidance for Food Allergy Families. So proud to have Tara McCarthy on our medical advisory board – she’s committed to supporting families living with FPIES in whatever way she can.
 Make an Impact Jan. 10, 2016: FPIES‬ and Autism: One family’s challenging journey highlighted in this in-depth article, “Life Not So Ordinary”, from Index Journal.
 raise awareness get involved  Jan. 9, 2016: Parents pledge to eat only the four foods that are safe for their ‪‎FPIES‬ toddler, read more in the  Northamption Chronicle.
 Cute pupils sitting on floor in library at the elementary school  Jan. 5, 2016: Article on The Mighty sharing how one amazing teacher goes the extra mile to include child with ‪‎FPIES “When a Teacher’s E-mail About My Son’s Food Allergies Made Me Cry“.





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Page published:  July 4, 2012. Last update: Jan.17,2017. Copyright © 2012,The FPIES Foundation