Sunday, October 30, 2016

More Insights from the Global Patient Registry

More Insights from the Global Patient Registry
by Hilary Lagerwey 

Last year we shared some statistics gleaned from the data provided by FPIES families across the globe. The Global Patient Registry  is a platform to collect information such as medical history, family history, and specific symptoms. The purpose behind this data repository is to both help families glean some insights into this rare disease and also give researchers some direction so that the whole FPIES community can learn more. The information you all have already provided is invaluable and we are always looking for more people to take the surveys.

In our last report we examined what FPIES looks like so this year we decided to focus on medical and family history. Although no one knows exactly what causes FPIES, data such as this can possibly help further our collective understanding.

As you look through this data for yourself, it is important to note that these are informational survey’s and not collected in the same ways as other types of research such as a scientific study. The data comes from volunteer respondents and all of the information is patient/caregiver reported. Some families might be more likely than others to participate in the survey, and while this means the numbers here may skew towards the more severe and more protracted cases, we feel it is still important to give a voice to this group of FPIES patients. The more data we have the more we can learn and share with researchers. In sharing this information and analysis, our intent is not to present these statistics as conclusions, but as starting points for a discussion amongst the community. This article is just the beginning of these conversations!

When looking at statistics like this for a certain sub-population, in this case FPIES patients, it is most useful if you have a number to compare that to in the general population. For some of these numbers we do have a reasonable idea of how FPIES patients compare to the general population, and for some of these numbers we know less.

Again, keeping in mind that these are survey responses and not a specific scientific study, this information does not support the idea that birth circumstances (C-section births or prematurity) play a strong role in the development of FPIES. The percentages of C-section births and premature births are slightly lower for the FPIES population than the general U.S. population. (Note that this isn’t an examination of whether those numbers are statistically significantly lower, but they certainly aren’t dramatically higher.)
Looking at first degree relatives of FPIES patients (parents and siblings) can help get an idea of whether FPIES tends to cluster in families. Unfortunately at this time the prevalence of FPIES in the general population is not known so we have nothing to directly compare these numbers to, but as awareness spreads and research continues, perhaps we will soon know more about the overall prevalence. If we assume the population prevalence is less than 1 in 10 then this data might suggest a tendency for FPIES to cluster in families. The next question to ask would be does that clustering indicate a genetic component, or some sort of shared environmental factor such as the microbiome, or a combination of those factors?
These statistics that shows a seemingly high prevalence of GI disorders, metabolic disorders, and autoimmune disorders in the family history of FPIES patients, and especially the mothers, are perhaps the most interesting but also the least straightforward of this list. At first glance, this makes one question if there is some sort of genetic link here between GI disorders, metabolic disorders, and autoimmune disorders and FPIES. But we must also keep in mind that this is a pretty broad category of diseases so the number of cases you would expect in the general population is probably fairly high and also tricky to estimate for a number of reasons. 

It is also interesting that in our sample GI disorders, metabolic disorders, and autoimmune disorders seemed to disproportionately affect the mother. Does this suggest some sort of environmental factor in utero that contributes to FPIES? Or is this simply reflecting the fact that autoimmune diseases disproportionately affect women and the fact that women are more likely to go to the doctor and therefore more likely to be diagnosed with any condition? Or some combination of all of these things?

As you can see this data can be very useful and we as a community can help encourage more research so that we can all learn more. This data is very preliminary and these discussions are just the beginning. Please take the survey if you have not already so we can all continue to learn more!

This post is written by FPIES Mom and FPIES Foundation volunteer, Hilary Lagerwey.  Graphic created by FPIES Mom and FPIES Foundation volunteer, Melissa Rice.

Monday, October 10, 2016

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 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 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

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

Sunday, October 2, 2016

The FPIES Foundation Joins with Food Allergy Research & Education In Support of the Teal Pumpkin Project® This Halloween

The FPIES Foundation is pleased to announce its pledge of support for the Teal Pumpkin Project®, a worldwide movement to create a safer, happier Halloween for all children.

The Teal Pumpkin Project, which launched as an international campaign in 2014 by Food Allergy Research & Education (FARE), provides an alternative for kids with food allergies, as well as other children for whom candy is not an option, and keeps Halloween a fun, positive experience. Participating in the campaign is as simple as buying inexpensive non-food treats such as glow sticks or small toys and placing a teal pumpkin on your doorstep to show non-food treats are available. Those who do not have a teal pumpkin can still participate by handing out non-food treats and hanging a poster which can be downloaded for free from the Teal Pumpkin Project website. FARE’s goal in 2016 is to have at least one home on every block in the U.S. with a teal pumpkin.

The FPIES Foundation joins with FARE in spreading awareness of the Teal Pumpkin project through sharing FARE’s free resources for families to print & share on our website blog and social media. 

You can participate by :
  • Providing non-food treats for trick-or-treaters
  • Placing a teal pumpkin in front of your home to show you have non-food treats available
  • Displaying one of FARE’s free printable signs to explain the meaning of your teal pumpkin
  • Spreading the word in your online community. Be sure you’re following FARE on Facebook, Twitter, Instagram and contribute to the conversation using #TealPumpkinProject
  • Download free activities for kids  from FARE

“We are so pleased that The FPIES Foundation is helping to spread awareness about this year’s Teal Pumpkin Project® campaign, as we believe a unified effort will create even greater participation, leading to a more widespread understanding of the severity of food allergies and the impact that this disease has on millions of children,” said Lois A. Witkop, FARE’s chief advancement officer. “Together, we can help ensure a safer, happier Halloween for all.”

For more information, including free printable signs, stickers, posters, flyers and other materials, visit

Food Allergy Research & Education (FARE) works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. This potentially deadly disease affects 1 in every 13 children in the U.S. – or roughly two in every classroom. FARE’s mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. Our work is organized around three core tenets: LIFE – support the ability of individuals with food allergies to live safe, productive lives with the respect of others through our education and advocacy initiatives; HEALTH – enhance the healthcare access of individuals with food allergies to state-of-the-art diagnosis and treatment; and HOPE – encourage and fund research in both industry and academia that promises new therapies to improve the allergic condition. For more information, please visit and find us on Twitter @FoodAllergyFacebookYouTube, and Pinterest.

This post was contributed by FARE.  "The TEAL PUMPKIN PROJECT® and the Teal Pumpkin Project® logo are registered trademarks of Food Allergy Research & Education (FARE)."