Dec. 15, 2015: The FPIES Foundation is proud to announce a research grant for FPIES mom and Professor of Health Science Dr. Jeanelle Boyer. Dr Boyer will research the role microbiomes may play in the gut of an FPIES infant. Read more from Keene State College, “Professor Boyer Wins Grant to Study Food Disorder in Infants”.
Nov. 20, 2015: FPIES aunt, Amy Walsh, a Consultant for Pink Zebra, is excited to share a new fundraiser to benefit The FPIES Foundation! Pink Zebra offers a unique product line of beautiful fragrances. Check out the fundraiser event on Facebook, or click over to her consultant page on the Pink Zebra website to purchase Pink Zebra in time for the holidays for your family and friends today! Fundraiser runs through Dec.6th, 2015
Nov. 1, 2015: We want to thank everyone who shared their Teal Pumpkin pictures! It was amazing to see your creativity and heartwarming for food allergy families of all kinds.
Oct.27, 2015: Trick-or-Treat safely with your FPIES Child! An FPIES mom came up with this simple poem. Print it out and pre-deliver it with your child’s safe treat!! Read more in this blog. For additional idea’s, read our blog from 2013 on Allergy Friendly Halloween.
Oct.23, 2015: Call to Action! On November 5th, 11am at the State House there will be a hearing a on House Bill #3488. Please support Massachusetts House Bill #3488, providing insurance coverage for elemental formula for those with GI disorders and severe food allergies, such as FPIES. Contact your MA State Legislators and tell them you support the House Bill #3488. To find your legislator go to https://malegislature.gov/People/Search and enter your zip code. Don’t know what to write? See our sample letter you can e-mail or print out and mail your representative.
Oct.20, 2015: We have been honored with one of the first Top-Rated Awards of 2015 from GreatNonprofits! We appreciate all of your reviews!
Oct. 14, 2015: Desiree Walters, mom of a child living with FPIES, is raising awareness to the Teal Pumpkin Project in Canada, Read more on CHCH news.
Oct. 14, 2015:Cooking with Food Allergies! Join Co-Founder and Co-Director of The FPIES Foundation, Amanda LeFew, as she invites you to learn about various aspects of cooking with FPIES.
Oct. 14, 2015: Our Global FPIES Day online event continues! Join Licensed Marriage Family Therapist and mom of a child with FPIES, Honor Genetski, as she explores how FPIES can impact family dynamics, watch and share “Nourish the Whole Child“.
Oct. 14, 2015: Global FPIES Day is here! In our first video release for our Virtual Online Interactive Community Event, Pediatric Gastroenterologist Dr. Amana Nasir gives a great overview of FPIES, perfect for medical professionals, families and caregivers. Step into Dr. Nasir’s office for an Overview of FPIES.
Oct. 8, 2015: Kara and her family knows what it means to Be the Voice forFPIES. Their goal in the days leading up to Global FPIES Day on Oct 14th is to raise FPIES awareness. Their little girl is a fighter with multiple rare diagnoses. Learn more about Kara here.
Oct. 7, 2015: We are a week away to Oct 14th and so excited to announce our ‘V.O.I.C.E.’ initiative. It’s a Virtual Online Interactive Community Event. Think of it as a worldwide FPIES conference that we bring to you in the comfort of your home! Webinars, videos and resources to address all aspects of FPIES. Bookmark our Global FPIES Day page!
Oct. 6, 2015:TV News segment with FPIES Foundation Co-Director Joy Meyer to raise awareness for the Teal Pumpkin project!
Oct. 4, 2015: Congratulations to Team Fighting FPIES – a top fundraising team at this year’s FARE Walk in Boston.
Oct. 2, 2015: FPIES families proving once again you are the voice! Thank you for appealing to FARE and raising your concerns about their recent blog post on FPIES. And a big thank you to FARE for listening and revising the post to include an FPIES action plan and better reflect the research showing FPIES reactions through breast milk. Recognizing FPIES in the big picture of Food Allergies is a big step towards sparking research. We look forward to continued work with FARE, including at this weekend’s walk in Boston where an FPIES mom has the honor of emceeing the event.
Oct. 1, 2015: Exciting FPIES news! As of today FPIES has an official diagnostic code! Teamwork brought about this historic step, but what now? This blog details what an ICD-10 code is and what this means for your FPIES child.
Sept.30, 2015: Birthday Cards for Seth!Seth has FPIES, along with several other diagnoses. He is currently in the hospital where he will be spending his 3rd birthday. His family has shown incredible support for everyone in the FPIES community and we want to give back to them. We encourage FPIES families to show their support by sending Seth cards. Learn more about Seth here.
Sept. 10, 2015: Check out “Fighting FPIES” team page for the upcoming Boston FARE walk (October 4th)! Every year, The FPIES Foundation looks forward to supporting our friends at FARE! Register to join the team or show your support with a donation today!
Aug. 31, 2015: Happy Anniversary to US! It was 4 years ago, this week, that the FPIES Foundation began! Read more: Our Fourth Year in Review!
Aug. 22, 2015: Please read, sign and share this petition to support a fellow FPIES mom in Florida who is asking the Senate to mandate coverage on elemental formula for children who are medically dependent on it.
Aug. 4, 2015: FREE for FPIES and Food Allergy Families! We are proud to partner with Boston Children’s Hospital for the 3rd year in a row for their Food Allergy Awareness Day at Boston’s Franklin Park Zoo on Saturday, September 19th. Come meet us, and other FPIES families. The event is free, but registration is required, register here: https://bch.webconnex.com/zooday
August 3, 2015: Independent Jamberry Nail Wrap Consultant and Foundation Volunteer Kate Hutchens has created nail wraps for Global FPIES Day on Oct.14th! To learn more visit her page. Hurry, this sale closes Sept.1st!
June 17, 2015: Spotlight on FPIES! 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. Read more from Dr. Bird on our blog.
June 10, 2015: Find a Food Journal as unique as your child. We know well that one size fits all does not apply to FPIES. A mom shares one approach in this blog that caught the attention of her doctors.
May 28, 2015:Share your family favorites! We know how hard it can be to find allergen friendly products for your family. That’s why we’re asking YOU to help other families and share what products you use regularly or have discovered! Please message us some of your favorite finds. When possible please include a picture of ingredient list and where product can be purchased.
May 27, 2015: A *must share* with your medical team, especially your nutritionist! This Nutrition page compliments our new family nutrition page but is designed specifically for the medical professional dealing with FPIES.
May 26, 2015: New tool for FPIES families! We are so proud to launch our nutrition resources page. Questions about growth charts, formula, breastfeeding, food journals and balanced diets? We’ve got answers to these and so much more.
May 15, 2015: Do you know how to recognize shock? Our FPIES Medical experts break down the critical symptoms you need to look for. Download this file and share it with everyone who cares for your child.
May 14, 2015:FPIES in the news!! Foundation Co-Director’s son shares his story to spread awareness during Food Allergy Awareness Week!
May 14, 2015: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!
May 3, 2015: US FPIES Day is May 4th. We are encouraging all our families to raise awareness and get the conversation started! Use your social media accounts and the hashtag #AskMeAboutFPIES Those closest to us have questions. Let’s let them into our lives and provide answers! Helpful Tools to start the conversation.
Spring 2015:FPIES, Not Your Typical Food Allergy by Gary Fitzgerald. Big thanks to the Bofferding family for their interview in Allergy & Asthma Today, a quarterly publication of the Allergy & Asthma Network.
April 30, 2015: We are preparing for Food Allergy Awareness Week 2015! FPIES in a word: Simple words, complex diagnosis. Follow us online for events during Food Allergy ACTION month!
April 27, 2015: Your child could be the ‘Face of FPIES Awareness!’ We are looking for photo submissions for our Food Allergy Awareness video. First, find a word below that describes your FPIES journey. Then, find a photo that shows it! Email your submission to us at firstname.lastname@example.org
April 20-26th, 2015: Celebrate Allergy Awareness Week in the UK by viewing and sharing their latest beautiful and poignant “FPIES Uk Awareness Video“.
April 2, 2015: Just in time for Mother’s Day! Flower Power fundraiser running from now until May 1st— lots of beautiful flowers, 50% of all sales will be donated to The FPIES Foundation! To get started, go to our fundraiser page.
March 27, 2015: Two Days JUST for FPIES! Two days to build awareness and education to this rare type of Food Allergy! A day during Health Education Week, celebrating Global FPIES Day on October 14th, established in 2014. And, just announced, a U.S National Day on May 4th during Allergy Awareness month!
March 2015: March is 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.
March 4, 2015: Be part of #FPIES research. We are excited to announce the latest survey up on the only Global FPIES Patient Registry. We worked hand in hand with our Medical Advisory Board to compile this survey that takes an in-depth look at the gastrointestinal toll of FPIES. Join the registry today and instantly see global results.
February 26, 2015: We are proud one of our parent volunteers Victoria Warren represented FPIES and the Foundation at an event in Boston this week. She shares this with us: “It was an amazing event and so powerful to hear from other families dealing with a different rare disease but having similar fears, struggles and frustrations. It was awesome meeting Peter Saltonstall, the president of NORD. It was also empowering meeting with my state lawmakers and having them genuinely listen to what living with FPIES is like and how changes to formula insurance laws and deductible caps could really help.”
February 25, 2015: We are not alone. FPIES is a rare disease, but 1 in 10 people worldwide suffer from some type of Rare Disease. There are 7000 rare diseases identified, including FPIES. In the U-S, a rare disease is defined as one that affects fewer than 200,000 people. There is power in numbers. This year for Rare Diseases Day on February 28th, we put a face on the 1 in 10.
February 20, 2015:We are #FPIES. We are the #1in10. We are not alone. FPIES is a rare disease, but 1 in 10 people worldwide suffer from from some type of Rare Disease. There is power in numbers. This year for Rare Diseases Day on February 28th, let’s put a face on the 1 in 10. Send us your picture on Facebook and we will add the 1 in 10 hashtag and then publish your photo in our social media pages.
February 8 – February 14, 2015: This week is Feeding Tube Awareness Week from Feeding Tube Awareness Foundation. Follow Tube Feeding Awareness this week for daily updates on the awareness of those who need a feeding tube to receive their nutrition. Awareness is key!
February 3, 2015: Rare Diseases Day 2015 is coming up and just in time we have new gear that is fabulous! Check out our Cafe Press store. Let’s raise FPIES Awareness together!!
February 2, 2015: 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 goal of the gastroenterologist in FPIES care.
January 22, 2015:Save 15% with promo code “FPIES”. Brandi, an FPIES mom and owner and operator of Glam Tots, is offering a discount and fundraiser for the month of February. Use the code and save! Read more…