Find Your 14 Tools to Get Involved on Global FPIES Day

This year we will be celebrating the third annual Global FPIES Day on October 14th. Once again we are encouraging you to find your 14! Reach out to friends, family, or community members and get involved this Global FPIES Day with one or more of these 14 suggestions.

#1. Create a “Be The Voice” picture frame.

Click here for details on how to download and create your frame. Then share it on your favorite social media site and invite 14 friends or family members outside the FPIES community to make one as well in honor of your little one.

#2. Create and display a FPIES awareness ribbon.

The orange and teal awareness ribbon featured on the “Be The Voice” picture frames is a visible reminder of the strength and advocacy of the FPIES community. You can get your whole family involved in creating ribbons that can be worn or used as decorations. Here are some ideas:

• You can find two printable ribbon templates here (one flat and one 3D). Print one out for each family member and let everyone decorate them in orange and teal.
• You can also use the flat template to create a stencil (just cut out the ribbon, leaving the rest of the paper intact). Then use the stencil to paint a FPIES awareness ribbon on a t-shirt, tote bag, notebook, or whatever you like!
• Make a perler bead awareness ribbon. You can see an example of a perler bead awareness ribbon here and a template for another version here. Just switch up the colors to create your own FPIES ribbon. When completed, these ribbons can be attached to keychains, necklaces, or just displayed as is.
• Make a larger awareness ribbon or wreath that can hang on your front door. You can find some beautiful examples by typing “awareness ribbon door hanger” into a search on Pinterest.

#3. Cook or bake one of your child’s favorite FPIES friendly snacks.

Take some time today to make one of your child’s favorite recipes and then share it with 14 friends or family members. Including a FPIES awareness card or flyer with each snack can be a great way to share FPIES information.

#4. Wear Global FPIES Day awareness gear.

You can purchase Global FPIES Day clothing and accessories from CafePress.com. Proceeds from the profits of these products go to the FPIES Foundation, so just making a purchase helps our efforts to advocate for FPIES families. You could also make your own FPIES gear (check out #2 for some ideas). However you get your gear, though, be sure to wear it proudly on the 14th!

#5. Share the Global FPIES Day button on your blog and social media sites.

This is a great way for partners and medical professionals, as well as families, to get involved. Just click here to get the html code that can be added to your blog or favorite social media site. If you have a child who suffers from FPIES, be sure to share your own inspirational story along with the button.

#6. Share FPIES educational materials with others.

Global FPIES Day is the perfect time to help your friends and family members better understand FPIES and how it effects your child and family. There are lots of great materials available at fpiesday.com. Take some time to go through the site and pick out a few materials that you can send to 14 friends or family via social media, an email, or a letter.

#7. Start a conversation for FPIES awareness.

Get in touch with a local parent group, breastfeeding support group, school, etc. and discuss the possibility of speaking with the group about FPIES. Be sure to let them know whether you are a medical professional or a parent who can speak about your personal experience. Be sure to check out the resources on our site about starting the conversation.

#8. Share posts made by The FPIES Foundation on Facebook and Twitter.

If you haven’t already, like or follow us on Facebook and Twitter. Then check out some of our recent posts and share a few with at least 14 people.

#9. Connect with 14 other families in the FPIES community.

You know firsthand what it is like to live with FPIES. Take some time today to reach out to 14 other families in the FPIES community and share a few words of support and encouragement. That might be as simple as a phone call or a message on social media, but just let them know that they’re not alone.

#10. Send 14 thank you notes.

Reach out to 14 people who have touched the lives of your family and helped you along your FPIES journey. Whether you send them an email, give them a call, or just send a quick note through social media, take time to say thank you for their support.

#11. Share the medical provider packet of FPIES educational materials.

If you are a parent of a child with FPIES, there’s a good chance that you struggled to find a doctor who could correctly diagnosis your little one’s condition. Help current and future FPIES families by reaching out to 14 medical providers and sharing the educational materials listed on fpiesday.com.

If you are a medical provider, Global FPIES Day is an excellent opportunity to learn more about this condition. Check out these 14 articles for professional education and development.

#12. Share the FPIES information packet for schools and day cares.

You can find information about spreading awareness to schools by visiting our website and clicking on the “Schools” tab. The information packet provides excellent resources to educate school and daycare employees.

#13. Promote the FPIES Foundation's YouTube videos.

Subscribe to our channel on YouTube and then select one or two of our videos to share on your social media pages. Just be sure to share with at least 14 people!

#14. Support fundraisers and awareness events for The FPIES Foundation.

You can watch for upcoming events on our website and Facebook page. If there is an upcoming event in your area, invite 14 people to come out and support our efforts to educate and advocate for FPIES families.

How will you find your 14 this Global FPIES Day?

This post was written by FPIES Foundation volunteer Aubrey Fredrickson.  Aubrey is a freelance writer and mother of two. Although not personally touched by FPIES, she is grateful for the opportunity to be involved with the families and volunteers of the FPIES Foundation

Global FPIES Day Impact!

From the moment The FPIES Foundation announced the day in August to the official proclamation released on Global FPIES Day itself, the FPIES community has been making a great impact for the first Global FPIES Day! Immediately, our community set out to raise awareness in families' hometowns and host fundraisers, assisting the Foundation in building awareness and support to empower families and the medical community on this special day and all year round!

Global Day was established by The Foundation as a day specifically set aside for FPIES, a day to hone in on specific awareness, education and outreach objectives. An “FPIES: Be The Voice” awareness ribbon was developed for The Foundation and Global Day by an FPIES family. The unified colors of teal and orange hold great significance. Teal represents Food Allergy Awareness and Orange signifies strength and advocacy, mirrored in the Foundation logo.

On the days leading up to Global Day, the sharing of the "Be the Voice" Ribbon Frames was astounding! In all, this Facebook album reflects the faces of 220+kids (and advocates supporting them!) from around the globe! Additionally, over the week our social media pages increased in followers, and our FB posts reached over 21,000 viewers!

Awareness was built through your “Share Your 14”efforts in your community, by sharing what Global Day means to your family, and by creating the “Be the Voice” Ribbon frames! Fundraisers raised awareness and funds from events such as: T-fund Global T-shirt sales, Jamberry Nails, Etsy shops, and HP Threads custom designs. Jersey Mikes in James City, North Carolina, set the tone for establishing local awareness! The Cafe Press-FPIES Foundation storefront and Bravelet sales demonstrated the FPIES community's commitment to spreading awareness, fashionably!

We were thrilled to see kids getting in the action! There was Vivian and her custom glitter tattoo (made to her request!), and the magnitude of photo shares of kids raising awareness in Global day t-shirts. We “met” siblings creating unique Global Day flags, and were so moved by the actions of countless others! It is so powerful to see such a community of budding advocates! Great work, kids!

Our partners at Sarah's FPIES Clubhouse hosted events all month long, leading up to the big day! From naming the Awareness Heroes (be sure to stop by The Clubhouse and meet Super Sally and Flying Freddy!), to mazes and coloring events created just for the day, the Clubhouse was the place to be for kids in action!

We were excited to see several families sharing their stories in news stories, as well as online and print publications:

·         "I want you to Know about Why My Son Can't Eat", published on the Leaky Boob.com.
·       "Local Couple Seeks to Raise Awareness on Invisible Allergy" published on the Beaumont New
·       Cohen's Story, appearing on WOAY Newswatch

The work doesn't stop here! The Foundation has been following the guidelines set out to establish the day as an officially recognized National Health Observance Day. Please continue to follow our website's “News & Events” and social media postings, as we work with Advocacy representatives assisting this community in achieving this goal. There are always ways for all families and communities to pitch in-- keep posted  to learn how you can help throughout this process and beyond!

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

The Proclamation for Global FPIES Day

Today, on Global FPIES Day, at The FPIES Foundation, we are proud announce the official proclamation for the day.

The FPIES Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community. Collaboration among medical professionals, families and affected patients, and global partners allows for furthering awareness, promoting advocacy, and fueling future research, worldwide.

Food Protein-Induced Enterocolitis Syndrome, FPIES, is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profuse vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, a negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.

For individuals affected by FPIES, significant delay in diagnosis can be common, which may lead to increased acute episodes and compromised quality of life. Lack of conclusive diagnostic testing and diagnosis management strategies can impact the standard of care received by these individuals. Lack of awareness among medical professionals can affect appropriate diagnosis and follow-up care. In honor of Global FPIES Day, we aim to raise greater awareness to this often misunderstood diagnosis. At The FPIES Foundation, we not only recognize the need for research to help future children and their families, but we also recognize the need to help our families and medical professionals now by providing education, advocacy and support resources, online and in our global community.

On Global FPIES Day, we continue to further awareness through providing resources, such as printable packets for medical provider, school/caregiver, and patient education, respectively. Flyers and printable informational materials are provided for promoting community understanding. Interactive activities, such as creating “Be the Voice” social media frames and taking part in “Find Your Fourteen,” foster advocacy among patients, families, medical providers and our partners. The website, www.fpiesday.com, provides additional resources and tools to further the mission of Global FPIES Day.

Throughout the year, we at The FPIES Foundation uphold the ideals and promote the mission of Global FPIES Day. We continue to invest our resources in outreach worldwide, for medical providers and families alike-- a provider database, bi-lingual resources, printable forms and documents, and other tools to empower our community to support individuals affected by FPIES. We expand our global partnerships through project collaborations and resource sharing. Our FPIES Global Patient Registry provides information on current trends reported by FPIES families and is made available to researchers in the field, fueling future novel scientific endeavors. Our dynamic and diverse medical advisory board provides multidisciplinary support to our ongoing initiatives. 

Imagine parents holding their sick child in the dark night, scared and alone, not knowing where to turn for help. Envision the light that knowledge and the insight of an informed global community can bring to these dark nights, to these children and their families. We invite families, medical providers and partners worldwide to strive toward improved patient and provider education, community support and advocacy for all affected individuals and their families.

NOW, THEREFORE, we, The FPIES Foundation, a nationally recognized 501c3 non-profit organization and sponsor of this day, do hereby proclaim October 14, 2014, as Global FPIES Day. We invite the global community at large to observe this day with programs, ceremonies, resources and activities that promote education, support, advocacy and research for FPIES (Food Protein-Induced Enterocolitis Syndrome) worldwide.

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