Raising FPIES awareness on The Mighty

A diagnosis of FPIES can be life-altering.  So, when The Mighty asked our community for some of the things parents of children living with FPIES are doing, because of the diagnosis, that other people may not realize, the response was incredible.  

With over 150 million readers and thousands of contributors, The Mighty has been building a community of online rare disease support.  They “publish real stories by real people facing real challenges”.   They have created a safe platform for rare disease community members and organizations to connect with others, share their stories while raising awareness and support for rare diseases as a whole.  Together we are strong. 

The Mighty has given us the opportunity to share your experiences in stories such as:

33 Things Parents Do When They Have a Child With FPIES

19 Secrets Families With FPIES Wish Others Knew 

We are proud to be among the over 200 rare disease non-profit organizations that support and partner with The Mighty. We will continue to bring additional awareness stories in the future. 

If you would like to contribute a story, please visit https://themighty.com/submit-a-story/

Global FPIES Day 2016 Impact: How we made a difference

It’s been a month since we celebrated Global FPIES Day and we’d like to take a look back at all we shared and accomplished together.

Tools that Build Bridges

This year’s theme was “Tools that Build Bridges” and we were able to provide some amazing new tools to help families and spread awareness. They can be found on the Global FPIES Day webpage.

1. We released 9 video presentations for FPIES families. The entire playlist can be seen here.
2. We debuted our new Online Learning Library, where you can find multimedia resources for education and awareness.
3. We offered multilingual resources to reach out to a wider audience and help as many families struggling with FPIES as possible.
4. We focused on nutrition with the release of our nutrition worksheets, which can be found on the Global FPIES Day page and the Online Learning Library. We also talked about the Nutrition Webinar, which was held on October 25^th.
5. We partnered with The Mighty, an online community for people struggling with serious challenges, such as health or mental illnesses. Check out this blog post contributed by The Mighty for more information. We also used Facebook to ask you “What’s one secret you wish others knew about caring for someone with FPIES?” The Mighty used your answers to put together a wonderful blog post, 19 Secrets Families With FPIES Wish Others Knew.
6. We hosted an FPIES Twitter chat with Foundation volunteer Victoria Warren and MAB member Dr. Sakina Bajowala about the ins and outs of emergency care. We’ll be posting a summary here on the blog, so watch for that soon!
   

Families

And of course, many FPIES families found their own ways to build bridges and spread awareness. As in previous years, some created and shared a “I am the voice” picture frame. You can view the online album here.

Others took some time on Global Day to post about FPIES on Facebook, to change their profile picture to the FPIES day button or picture frame, and some even held their own events. Mom and LuLaRoe Consultant put together a family fundraiser, while the Litteral family handed out flyers featuring their “I am the voice” picture frame.

We want to thank them and all the families who reached out to others and found ways to talk about FPIES on Global Day!

Partners

We also want to give a shout-out to our partner organizations who helped spread the word by sharing information about FPIES and Global FPIES Day on their social media accounts and websites. Sarah’s FPIESClubhouse put on a great awareness campaign, including some Webkinz giveaways.

Several of our partners, including CMNuA, No Biggie Bunch, and Global Genes, tweeted or retweeted about Global Day. You can see those by searching for GlobalFPIESDay on Twitter. Others posted or shared our posts on Facebook, including AllergyFree, Feeding Tube Awareness, and My Munch Bug. You can see those by searching for Global FPIES Day on Facebook.

There were many, many other partners who got involved on Global Day and we are so grateful for all the support!

Presenters

Finally, we want to say thank you to the amazing presenters who created the online videos. Your contributions were a large part of this year’s Global FPIES Day and it wouldn’t have been the same without you!

• Kyle Brown, CEO of Patient Crossroads, for explaining the importance of the FPIES Global Patient Registry in “FPIES at a Crossroads.”
• Claudine Crangle, author of “Woolfred Cannot Eat Dandelions – FPIES,” for reading her delightful story for us.
• Dr. Jeanelle Boyer for telling us about her work in “FPIES and the Microbiome: A research update from Dr. Jeanelle Boyer.”
• Dr. Amana Nasir for giving us some very useful tips in “Preparing your child for GI tests and procedures.”
• Honor Genetski, MFT, for reminding us to take care of ourselves as well as our children in “Self-Care for Parents: Reflections for Caregivers.”
• Joy Meyer, Co-Director of The FPIES Foundation, for giving us a new recipe in “Making Hemp Milk.”
• Amanda LeFew, FPIES Foundation Co-Founder and Co-Executive Director, for helping us with our next awareness event in “Creating an FPIES Resource Table for Your Awareness Events” and for helping us foster coping skills in our children in “Creating Calm.”
• The Children's Medical Nutrition Alliance for teaching us about “Navigating Insurance and Medical Nutrition.”

To all who participated in Global FPIES Day 2016, you made a difference! We know that as we take these tools and move forward, we will continue to build bridges and find ways to help children and families struggling with FPIES.

We’d love to hear how you spent Global Day this year, so please comment below and let us know!

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.

We're Partnering With The Mighty!

We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

Here's an example of the kind of stories on The Mighty: "A Letter to Parents of Children With Special Needs, From a Pediatric Nurse"

We're dedicated to helping people with FPIES in their lives. With this partnership, we'll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.

Content for this post was contributed by The Mighty.