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)." 

Sunday, September 18, 2016

Children’s Medical Nutrition Alliance

Here at the FPIES Foundation, we are always on the lookout for other organizations that can help your child and family through the daily struggles and challenges of FPIES. We are therefore delighted to announce that we have recently partnered with the Children’sMedical Nutrition Alliance (CMNuA). To help you understand more about what this wonderful organization does and how they can help families dealing with FPIES, we invited CMNuA to tell us a little about themselves.

What is the mission of the Children's Medical Nutrition Alliance?
Our mission is to improve the lives of every patient and family dealing with digestive disorders, diseases, and other medical conditions that require medical foods and formulas to survive and thrive. CMNuA creates that positive change through direct support, information, education, advocacy, and community.

Who does CMNuA help?
We help children—and their families—who have any severe food allergy, disease, or inborn error of metabolism that may require them to rely on medical nutrition to some degree. It doesn’t matter if your child has FPIES or PKU, we’re here to support and advocate for you!

What support does CMNuA offer to families with children who need medical nutrition?

CMNuA offers several levels of assistance to affected children and their families, including:
  • The Fund for Food and Families, which provides each qualifying minor up to ten cases of formula per year—free of charge! To qualify, the child must have a physician-documented need for medical nutrition, be unable to pay for medical nutrition, and must not receive reimbursement from any third-party payers.
  • Additionally, those same individuals and their families may apply for and receive diapers and assistance with non-covered medically related expenses. Those expenses can include travel costs when parents or guardians need to take their affected child out of town for treatment or testing.
  • We also provide a complete how-to guide and support materials for those families wishing to hold local fundraisers. All of the donations received are run through CMNuA and are 100% tax deductible to the fullest extent allowed by law. The funds from their fundraiser are earmarked for the family’s exclusive use and applied toward the purchase of formula on their behalf.
  • Finally, CMNuA partners with sister nonprofits to do webinars and events that provide resources, support, and information. We strive to focus on overarching quality of life issues for these families in six key areas: social, relational, institutional, financial, nutritional and psychological.

Can you tell us about one of the children or families who have benefited from CMNuA's support?

Savannah is a beautiful 2.5-year-old little girl with FPIES. After the sudden death of her mother, Savannah’s family struggled to pay for the expensive medical formula she needs to survive and thrive. At that time, she had NO safe foods and needed medical formula exclusively to survive. As of August 23, 2016, she only has three safe foods in addition to Neocate infant formula—carrots, olive oil, and prunes.

Through The Fund, we were able to supply Savannah and her family with 10 cases of the formula she needs. Additionally, through a fundraiser, we raised an additional $7,500 for the family. We connected them with Nutrica and worked with Nutricia’s assistance program to get the family formula at a substantially reduced price. As a result, the family has not had to buy formula since August of 2015 and has enough money in an account with Nutricia to cover Savannah’s formula through early November 2016.  You can read more on Savanna’s story on CMNuA's website. 

What advice or message would you most like to share with families struggling with FPIES?
There IS HOPE! You are your child’s best advocate and you are not alone. We are here to help you every step of the way with direct support, a listening ear, and referrals to resources and organizations, like the FPIES Foundation, that have the ground level, detailed information about your child’s condition.

CMNuA exists to build a coalition of nonprofits, doctors, parents, researchers, and advocates to support all families with children who may need medical nutrition. From the moment that your doctor suspects that your child may have FPIES, or perhaps another non-IgE mediated allergy, CMNuA is here to work with organizations like the FPIES foundation, IFPIES Association, various social media support groups, medical nutrition companies, and others to help make your journey as positive as possible.

What are the first steps an FPIES family struggling to pay for formula should take?
Contact your insurance company! Many families assume that their insurance won’t cover formula and that an appeal will be denied. In many instances that may not be the case.

Then contact CMNuA! We can provide you with a list of resources for discounted formula, advise you on your options with respect to government assistance programs processes, and share information about mandates in your particular state with respect to insurance coverage.

Additionally, our Fund for Food and Families is a great resource for parents who need help with medical nutrition and often we can ship formula within days of receiving a completed and approved application! You can learn more about the Fund for Food and Families and apply online here:
How can a family impact legislation?
Sign up as a CMNuA advocate and join our mailing list! We work closely with our sister organization, Children’s MAGIC US,
lobbying for mandated insurance coverage of medical nutrition for all children who may need it on both the state and federal levels!

To date, 20 states have some type of legislation on the books mandating medical nutrition coverage, though some are limited to inborne errors of metabolism or age restricted. We continue fighting to change that! Exciting things are happening at the federal level, too, and we are in the forefront of that fight.

Both CMNuA and our sister organization, Children’s MAGIC US, rely heavily on parent advocates like you to write letters, contact your representatives in person and by phone, share your stories, raise public awareness, and even testify at legislative hearings on the state and local level.  Each year, we strategically choose states in which the climate is most conducive to passing broad effective insurance mandates and legislation. We need as many parents behind us as possible, sharing their stories and showing lawmakers why this legislation needs to be passed.

You can sign up as a CMNuA advocate and join the mailing list here.

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