The FPIES Foundation has been honored with a prestigious 2014 Top-Rated Award by GreatNonprofits, the leading provider of user reviews about nonprofit organizations. The Top-Rated Nonprofit award was based on the large number of positive reviews that The FPIES Foundation received – reviews written by volunteers, families of children living with FPIES, and the general public. People posted their personal experience with the nonprofit. For example, one person wrote, “The FPIES Foundation has brought together a wonderful combination of support from others going through the same struggles, as well as expertise from the medical field to provide insight as the knowledge and information grows on how to diagnose and treat children with FPIES. They have put together so many resources to help families in one central place.”Being on the Top-Rated list gives donors and volunteers more confidence that this is a credible organization. The reviews by volunteers, clients and other donors show the on-the-ground results of this nonprofit. This award is a form of recognition by the community. Read more in 2014 Top-Rated Winner Press Release.
Oct. 29, 2014: Be The Voice: help further the reach of Global FPIES Day! The FPIES Community has the assistance of a congressional representative in making this day as a nationally recognized Health Observance Day already this year! Right now we need *Pennsylvania families especially* to share your story so we can have these letters hand delivered by this representative to Senator Pat Toomey in our efforts to get Congress to recognize Global FPIES Day. Please follow this link http://fpiesfoundation.org/letters-for-advocacy/ and email your letter to email@example.com . We need letters from FPIES Families, their extended families, friends, teachers, and medical professionals.
Oct. 23-25, 2014: The FPIES Foundation exhibits at the Annual NASPGHAN conference, a conference for Pediatric GI health professionals that includes Physicians, Physicians Assistants, Nurses and Dietitians. It was an honor to attend the events providing FPIES materials to these health practitioners vital to our children’s medical care.
October 11, 2014: The FPIES Foundation participates in FASGMN Food Allergy Resource Fair for the 4th year. Joy Meyer, Co-Director of The FPIES Foundation is on hand to raise awareness to FPIES, and provide CheeCha Puff Samples donated by our partners at CheeCha puffs.
October 5, 2014: The FPIES Foundation is honored to be among the exhibitors to have a booth at the FARE Walk in Boston. Amanda LeFew, Co-Director of The FPIES Foundation, greets families and raises awareness to Food Protein Induced Enterocolitis Syndrome, a different type of Food Allergy. Medical Advisory Board Members Dr. Lee, Dr.Yuan, and Dr.Shreffler are in attendance and meet up with a large group of FPIES Families!
Oct. 2, 2014: The FPIES Foundation introduces a new webpage for Global FPIES Day on Oct 14th. We are proud to launch a webpage dedicated to everything you need to know. This is a historic first for FPIES families and this webpage has easy ways you can be part of it: http://fpiesday.com/
Sept. 13, 2014:The FPIES Foundation is once again honored to provide families with FPIES information on at Boston Zoo on a day for families living with Food Allergies sponsored by Boston Children’s Hospital FACET program.
August 27, 2014: FPIES is a rare diagnosis that is often not fully understood, which can make it challenging for parents and medical providers. The FPIES Foundation partnered with ThriveRx to present “Advocating for your child in the Healthcare system”. The purpose of the webinar is to help families navigate the healthcare system by providing advocacy actions, tools, and resources to assist them and their providers as they care for their children living with FPIES. Read more at: http://fpiesfoundation.org/advocacy/ | The FPIES Foundation
August 25, 2014 – The FPIES Foundation is excited to celebrate its third anniversary of empowering, educating and helping families navigate Food Protein- Induced Enterocolitis Syndrome (FPIES). The Foundation is planning a week-long celebration leading up to August 31, 2014. This past year was packed with numerous accomplishments, big and small. The FPIES Foundation achieved its goal of launching a first-of-its kind FPIES Patient Global Registry. The registry is a ground-breaking opportunity to directly bring families affected by FPIES together with doctors and researchers interested in learning more about this rare allergy.Now, just in time for our anniversary, we are excited to announce that October 14th has been successfully established as Global FPIES Day. Global FPIES Day honors families by giving the opportunity to bring specific awareness to what FPIES is to the general public. “There are days to recognize other food allergies and rare diseases but FPIES is unique and the children are extraordinary. They deserve this day just for them,” says Joy Meyer, Executive Director of the FPIES Foundation. Meyer says, “October 14th was chosen specifically because the first research paper to mention the features of FPIES was published in October.” Read more in our Anniversary Press Release 2014
August 20, 2014: The FPIES Foundation has established October 14th as Global FPIES Day. Follow our website and social media to learn how you can help observe this first Global FPIES Day!
August 6, 2014: ThriveRx and The FPIES Foundation invite you to join us for a joint webinar:
Advocating for Your Child in the Healthcare System.
Date: Wednesday,August 27th
Time: 12-1 pm EDT
Food Protein-Induced Enterocolitis Syndrome (FPIES) is a rare diagnosis that is often not fully understood, which can make it challenging for parents and medical providers. The purpose of this webinar is to help families navigate the healthcare system by providing advocacy actions, tools, and resources to assist them, and their providers, as they care for their children living with FPIES. Click here to register.
After you register, you will receive a link to join the webinar. If you cannot join us for the live session, register and a link to the recorded webinar will be sent to you.
May 2, 2014: The month of May is devoted to Asthma and Allergy Awareness. This week, the UK has been bringing awareness to allergies during their National Allergy Awareness Week and our friends at FPIES UK released this beautifully strong video for FPIES Awareness!
April 1, 2014: The FPIES Foundation is proud to be part of a community that is FPIES Brave. Wear your FPIES Brave when you purchase a piece of Bravelet jewelry from our Foundation’s page. With every Bravelets purchase from our page, $10 will be donated to The FPIES Foundation, to advance our cause for education, advocacy, outreach and research. Show your FPIES Brave colors today!
March 25, 2014: The FPIES Foundation is thrilled to partner with Flower Power Fundraising, an employee-owned company that began as a joint initiative between Gardner’s Supply and Dutch Gardens. By purchasing spring bulbs to beautify your spring gardens, you are supporting the education, outreach and research initiatives of the Foundation. 50% of all sales will be donated to our cause! This season’s fundraiser ends April 25th, 2014!! Read more at: http://fpiesfoundation.org/ongoing-fundraisers/ | The FPIES Foundation
February 28, 2014: The FPIES Foundation participates in several online and social media awareness campaigns for Rare Diseases Day 2014.
February 5, 2014: The FPIES Foundation announces partnership with Sarah’s FPIES Clubhouse. Sarah’s FPIES Clubhouse, a partner organization of The FPIES Foundation, a great place for kids to share fun stories and activities, as well as find support when dealing with the ups and downs of life with FPIES. Sarah’s FPIES Clubhouse is supported by The FPIES Foundation Kids In Action program.
January 31, 2014: World Rare Diseases Day February 28, 2014. Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to “Join Together for Better Care”.
January 14, 2014: THE FPIES FOUNDATION INTRODUCING THE ‘KIDS SPOT’The FPIES Foundation is excited to launch the ‘Kids Spot.’ The ‘Kids Spot’ is designed with young children and their siblings in mind. It’s a place where FPIES is explained in simple terms and offers young children a way to understand this rare allergy and help a loved one suffering from it. It’s also a place where kids can just be kids, a fun interactive way to see that they are not alone.“FPIES is a diagnosis that affects the whole family,” says Foundation Co-Director Amanda LeFew. “Meal time can be turned upside down, new snack and eating restrictions may be placed on older children, and social engagements where food is present could be limited. In some cases FPIES symptoms continue beyond the toddler years and we feel it’s important for these children to know there are others out there like them. The ‘Kids Spot’ is designed to be a safe haven for these families looking for ways to teach young children about FPIES.” Read more: KIDS SPOT FPIES FOUNDATION PRESS RELEASE