The FPIES
Foundation Celebrates Anniversary with Huge Social Media Awareness Day
Allows families
to Text-A-Wish to support Foundation’s Efforts
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 25th, 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 30th 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 30th to 80077 to donate $5 to the FPIES Foundation and its efforts to help families.
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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 3rd 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
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
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