Awareness is the cornerstone to building a foundation of active support for FPIES children.
The FPIES Foundation supports efforts to raise awareness to FPIES in your local communities. Raising awareness can be simple and start with a single conversation! For examples of simple awareness conversations and how they were initiated, please visit our Start the Conversation webpage and blog post, “Start the Conversation for FPIES Awareness”, offering great awareness ideas.
For more information on ways to support The FPIES Foundation through a community event, visit our Fundraising page. Whether you are interested in creating a Foundation fundraiser, an awareness event, or a personal benefit in tandem with an FPIES Awareness event, The FPIES Foundation can provide you with the resources and tools to get you started.
Together, with the collaboration of families and medical professionals, we will continue to make changes today to build this lasting foundation for tomorrow, providing a network of caring, the support your need to support your child.
If you have an event you would like us to be aware of and share, please contact us today! The FPIES Foundation provides fundraising and awareness events packets with resources and tools on our fundraising and Awareness pages.
Events are featured here as shared by families of the FPIES Community. The FPIES Foundation is not responsible for monies exchanged during individual family events.
|April 6, 2017: “This Mom Hopes for a Better Future for Her Son Who Cannot Eat“, story of an FPIES Family featured on Newsworks raises awareness to FPIES.|
|Jan. 27, 2017: KDLT News in Sioux Falls, SD raises awareness to FPIES “Allergic to food: Sioux Falls Toddler Living with Rare Food Allergy“.|
|Nov. 24, 2016: One mom shares how she is turning experiences from her daughter’s allergy into a kickstart company. PeopleFood.com publishes “How One Mom’s Terrifying Thanksgiving Led Her to Create Allergen-Free Kid-Friendly Foods”|
|Nov. 15, 2016: FPIES and MCAS – a family shares their story about their journey battling two rare conditions, “Boy’s rare condition means he can’t eat“.|
|August 12, 2016: The Mighty features a guest blog post by FPIES mom, Kristine Lukanich, “Five ways to Support a Family with a Sick Child“.|
|June 25, 2016: “From Screams to Ice Cream”, FPIES mom Sophie Cosford writes an article about her son’s experience with FPIES for Allergy Today, a publication from Allergy New Zealand, and is published in the winter issue.|
|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.|
|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..|
|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!|
|April 14, 2016:Awareness raised this week in Australia, “My 13 month old baby is allergic to ALL food” by Ruth Devine featured on Kidspot|
|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.|
|Feb. 29, 2016:One mom educates her community about FPIES for Rare Diseases Day.|
|Feb. 29, 2016:Our friends at Global Genes share about “Starting the Conversation” about FPIES.|
|Feb. 2016:Inspiring children inspire research! Read Dorotea’s story to learn more!|
|Feb. 24, 2016:Our friends at Chee Cha Puffs highlight FPIES to raise awareness in a touching blog post: “FPIES– One Big Reason We Do What We Do”|
|Jan. 10, 2016:FPIES and Autism: One family’s challenging journey highlighted in this in-depth article, “Life Not So Ordinary”, from Index Journal.|
|Jan. 9, 2016: Parents pledge to eat only the four foods that are safe for their FPIES toddler. Read more in the Northampton Chronicle about this inspiring family.|
|Jan. 5, 2016: One amazing teacher goes the extra mile to include child with FPIES. “When a Teacher’s Email About My Son’s Food Allergies Made Me Cry”|
|Oct. 8, 2015:Lisburn toddler battles rare food allergy leaving her unable to eat anything. “Indi Rigby has been diagnosed with an extremely rare condition which doctors hope she will grow out of one day”…Indi’s parents share her story in honor of Global FPIES Day. Read more of her story on Belfast Live.|
| Sept. 12, 2015:
Rate of food allergies skyrocketing since late 90s FPIES story published on “Telling our story gave me access to the power I needed to find my way through, even though I never quite knew the next step until I took it. It gave me just enough Brave to inch ahead of my Scared, and continues to fuel the heart of this little corner of the Internet where I believe Everyone deserves a seat at this table.” Carrie shares the story behind the news story on her blog: Our Stable Table.
May 15, 2015:“Rochester boy suffering from rare food allergy helps spread the word” by Mike Sullivan, KTTC News in Rochester, Minnesota. Story also shared on KARE 11 Minneapolis/St. Paul.
|May 8, 2015:
FPIES makes the news in North Carolina. ABC 11 News reports “RARE FOOD ALLERGY AFFECTS BABIES, TODDLERS“.
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 26, 2015.In honor of her daughter’s FPIES, KidzAid founder Brionhy Westbrook, has set out to attempt the world record for training the most number of people in pediatric cardiopulmonary resuscitation (CPR) in one session. Read more on The Herald Sun.|
|March 11, 2015:FPIES mom makes a difference! Congratulations to Carrie Bramlee and ‘Super Cohen’s Crusade for FPIES‘ along with the Ronald McDonald House, for getting the state of West Virginia to recognize an FPIES Awareness Day on May 4th.|
|Nov. 17, 2014:A New Zealand family shares their story, “Keeping son alive until he outgrows allergy”, a touching piece describing this allergy for FPIES awareness.|
|Nov. 4, 2014:“Edmonton toddler allergic to all food”. News segment aired on Nov.4, 2014 to further global awareness to FPIES, a family in Edmonton shares their story with the news. View their story here|
|October 10, 2014: Local couple seeks to raise awareness on invisible allergy“. Article published By Omar Mosleh, La Nouvelle Beaumont News, a Canadian newspaper, on Friday, October 10, 2014. A family living with FPIES brings awareness to this ‘invisible allergy’ to honor Global FPIES Day, stating “We want other parents in the community to be aware of what FPIES is, because it does present itself as a silent allergy and resembles the flu…”. Read more|
|Boston FARE Walk Team FPIES Foundation makes the news! FPIES Families joined together to form Team FPIES Foundation to raise awareness to this type of food allergy. Foundation volunteer, and FPIES mom, Victoria Warren emceed the event.|
|April 28-May 4, 2014:The month of May is devoted to Asthma and Allergy Awareness. For National Allergy Awareness Week, (April 28-May 4, 2014), FPIES UK released this beautifully strong video for FPIES Awareness! https://www.youtube.com/watch?v=r3eBopTF4KE|
|Quick-thinking Tecumseh boy saves baby sister Charlie Marsh was awarded a Life Saving Award from at the EMT Award Recognition night for helping his mom by staying calm, packing her bag and flagging down the paramedics during his little sisters FPIES reaction. His story can be read at the Daily Telegram online.|
|February 5, 2014:News source Omaha.com shares happy news on February 5, 2014 in their featured article in the following of Fight for Jamus, happy news for Jamus and his family! Nutrition company to reintroduce formula for Omaha boy with rare food allergy|
|January 23, 2014:A Fight For Food, A Fight To Survive – January 23, 2014 a local NE news station, WOWT NBC, features a follow up to Fight for Jamus and his fight for a formula his body can tolerate.|
|October 25, 2013:Fight for Jamus – October 25, 2013 News story, “Child unable to eat, family desperate”, from WOWT NBC News Channel 6, Omaha Nebraska features Jamus, thriving on Neocate Jr, discussing his struggles with FPIES and formulation changes to his only safe food, elemental formula.|
|October 24, 2013:Family Fights for Son Battling Rare Food Allergies. October 24, 2013 news story from WINK ABC News, Lehigh Acres, Florida where Jennifer Gonzalez is raising awareness to FPIES for her son, Michael, and his struggles.|
|Survival Diet Not so Easy to Swallow. Raising awareness in Australia. FPIES Mom Heidi Finlay raising awareness for her daughter. Heidi’s taking all she’s learning and working in Australia to coach other families dealing with food allergies.|
|September 2013:Southington Boy has Rare Food Allergy:
Health WFSB 3 Channel 3 Featured a story a this sweet little boy living with FPIES in September 2013.
|June 8, 2013:Building Good Memories” Local girl with big heart battles rare disease by Amber Morris for the Lock Haven Express
“Think of what you ate today. How many meals did you have? How many snacks? How many courses in each meal? Now, how many ingredients did you consume in each one of those items? If you total it all up – the American 3 squares, plus 1 or 2 snacks, you are looking at hundreds or even thousands of ingredients for your whole day’s consumption. Yes, that’s right – thousands. Most of us are fortunate enough to not have to give it a second thought. Our eyes see something we like, we consume it, our body processes it, and we go on with life and don’t see or feel any immediate results. But it’s not like that for everyone. Meet Sarah Pepperman” Read more….
**This story was published on June 8th, 2013 edition of the LockHaven Express. The article, although not available online through the paper, is being shared by the author, Amber Morris. If you would like to contact the newspaper with a letter to the editor about the piece or about FPIES, write to the paper’s editor, Lana Muthler at email@example.com.
|CDC Takes Big Steps in Solving FPIESWith the news of the CDC approving the diagnostic code for FPIES, a local Minnesota news (KAAL ABC), featured a follow up story on Samuel Meyer, and how his family is helping him thrive.|
|June 3, 2013:Mom Fights for Boy Who Can Only Eat 7 Foods on
Good Morning America June 3, 2013. A segment in National News about a little boy overcoming the life-altering diagnosis of Food Protein Induced Enterocolitis Syndrome.
|May 16, 2013:Ryker Smith suffers from two rare food allergy conditions A news feature on KSDK aired on May 16, 2013 during Food Allergy Awareness Week, highlights the story of Ryker who has FPIES and Eosinophilic Colitis (EC) and how his community is rallying around his family.|
Page published: Nov.14, 2013. Last update: Jan.26, 2016. Copyright © 2012, The FPIES Foundation