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!

The FPIES Foundation Celebrates Three Years!

The FPIES Foundation is excited to celebrate its third anniversary of empowering, educating and helping families around the world to navigate life with Food Protein-Induced Enterocolitis Syndrome (FPIES).

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 Global Patient 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.

We are also excited to announce that The FPIES Foundation has established October 14th 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.”

In addition to establishing the FPIES Global Patient Registry and Global FPIES Day, achievements by the Foundation that were accomplished this year include:

• Releasing a Free Educational Webinar, “Advocating for your child in the Healthcare System” made possible through our partnership with ThriveRx. Find the recording to this webinar along with documentation resources and educational tools for becoming an advocate on the Advocacy page of the website. 

• Launching ‘The Kids Spot’. This section created just for kids, older FPIES children and their siblings can find support in a fun, interactive way that shows them they are not alone. Here they can find support for school, hospital stays, and social situations. Also, be sure to check out the Brag Board and Kids in Action pages!

• Engaging the community in “FPIES Be the Voice,” “FPIES Share how you Care,” and “Love your FPIES Selfie” social media campaigns. Hundreds of families helped us raise awareness in conjunction with Rare Diseases Day and Food Allergy Awareness Week

• Designing new FPIES Awareness Flyers and Cards

• Participating in the Free Allergy Day at Boston’s Franklin Park Zoo and the Food Allergy Support Group of MN Food Allergy Resource Fair

• Partnering with Sarah's FPIES Clubhouse, a great place for kids to share fun stories and activities!

• Supporting teams raising awareness in the Food Allergy community by participating in various FARE walks nationwide.

• Appearing in the Advocacy Month Feature in Complex Child E-Magazine, "FPIES: The Formation of a Foundation."

• Engaging in Social media outreach through Facebook/Twitter/Pinterest and the FPIES Foundation blog

• Expanding our online Provider Database to increase the number of FPIES informed providers committed to helping children living with FPIES.

• Achieving the Top-rated Non-Profit award from Great NonProfits, a distinction given to less than 10 percent of eligible non-profits.

• Appearing in “Big Y’s Dietitian’s Corner” and “Today’s Dietitian” articles, prominently featuring FPIES and The FPIES Foundation

• Participating in Feeding Tube Awareness Day, Rare Diseases Day and Food Allergy Awareness Week

The work does not stop here. The FPIES Foundation is excited for the year ahead and plans additional announcements in the coming weeks about our latest efforts in raising FPIES Awareness. 

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

The FPIES Foundation Celebrates Anniversary

The FPIES Foundation Celebrates Anniversary with Huge Social Media Awareness Day

Allows families to Text-A-Wish to support Foundation’s Efforts

August 25, 2013 The FPIES Foundation is excited to celebrate its second anniversary of empowering, educating and helping families navigate Food Protein Induced Enterocolitis Syndrome, or FPIES. 

The Foundation is planning a week-long celebration leading up to August 31, 2013 honoring the medical professionals, volunteers, and most importantly, the families who help raise awareness.  These amazing, strong families live with this rare allergy every day and are the reason the FPIES Foundation exists.

The week launches Sunday, August 25^th, 2013 with an exciting social media campaign filled with inspiring stories and the latest FPIES information and awareness opportunities.

The week caps off with the most aggressive FPIES Foundation fundraiser to date.  On Friday, August 30^th we team up with the Wish Upon a Hero Foundation for a special social media awareness day.  FPIES Awareness will race across Facebook, Twitter and personal cell phones as people participate in our Text-to-Donate day.  Just text WISH on August 30^th to 80077 to donate $5 to the FPIES Foundation and its efforts to help families.

FPIES is a rare and often difficult diagnosis.  It is a delayed food allergy affecting the gastrointestinal tract, typically diagnosed in infants and young children.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can cause severe lethargy, change in body temperature and blood pressure, and often lead to hospitalization. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.

The FPIES Foundation’s roots lie with families, started by moms who saw a vital need for information and resources.

Foundation Chair Joy Meyer says, “As we go into our 3^rd year I am even more inspired to be a member of this community.  Families and medical providers come together every day to help children living with FPIES thrive.  We have this great community to thank for these growing resources, building awareness and support.”

Highlights this year include:

• 501c3 Non-profit designation
• A newly expanded website with an extensive FPIES “toolbox” to help families check symptoms, journal foods, and prepare for doctor visits
• A provider directory filled with FPIES knowledgeable doctors and specialists
• Launching “FPIES, Now I Know” an awareness video inspired by real FPIES families
• “Awarenessis Action” campaign with brand-new resources families can print out to help educate medical professionals and raise awareness in their communities
• An expanding Medical Advisory Board dedicated to a multidisciplinary approach to FPIES
• The formation of a Volunteer Advisory Board made up of active members of the FPIES community
• Social media outreach through Facebook/Twitter/Pinterest and the FPIES Foundation blog
• Awarded certification from HON (Health on the Net) Code, “the commitment to reliable health and medical information on the internet.”
• FPIESFoundation supported regional monthly gatherings, and tools to help families start their own FPIES Foundation meet-ups
• Participation in Feeding Tube Awareness Day, Rare Disease Day and Food Allergy Awareness Week

The work doesn’t stop here.  The FPIES Foundation is excited for the year ahead with plans to launch a first of its kind ‘For Kids’ page, including a Child Ambassador program where the focus is entirely on the child, and not only on the child’s FPIES.
We will continue partnering with organizations to increase awareness and education while lobbying to create standardized practices for FPIES diagnosis and treatment.

The FPIES Foundation is an Incorporated 501(c)(3)Non-Profit Foundation. It is a collaborative effort of several families affected by FPIES whose relentless journey has sparked the desire to help other families find their way. FPIES is often under recognized and poorly understood. The organization's founders identified a dire need for tangible support resources for both the affected families and the medical community. The FPIES Foundation is committed to providing a credible and interactive support resource for this rare, oftentimes isolating diagnosis. It strives to make the everyday lives of FPIES children and their families easier.

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