National FPIES Day 2016


Posted 5.3.16 | Nutrition Specialist


The one day of the year a pie to the face is a GOOD thing! 

Got your attention? Good! Because May 4th is National FPIES Day! We wanted to share a few facts about FPIES and tell you about National FPIES Day, ways that you can get involved, and some organizations that help to raise awareness and support for FPIES.

FPIES

FPIES stands for Food Protein-Induced Enterocolitis Syndrome. This is a rare form of food allergy that is gaining awareness. FPIES affects infants and young children primarily, can take a long time to be recognized and diagnosed, and can mean very significant dietary restrictions. Want more details?

National FPIES Day

What better way to raise awareness for a condition than with a dedicated day? We can’t think of one! In 2015, the United States Senate designated May 4th as National FPIES Awareness Day! This resulted from efforts from the International FPIES Association (I-FPIES, more on them below) and over 1,000 supporters.

Raising awareness of FPIES can help highlight the disorder on behalf of affected children and adults. Together, we can make diagnosis and treatment – and life in general - easier for FPIES children and families.

Every day is a good day to raise awareness about FPIES, but National FPIES Awareness Day is probably the best day. Here are some ways that you can help to raise awareness and spread the word:

  • Change your Facebook or Twitter profile picture to the official event logo, available from I-FPIES, the FPIES awareness ribbon:

 

  • Share your personal FPIES story, photos, and words of encouragement on social media
  • Use the hashtags #NationalFPIESDay and #FPIESontheRise
  • Donate in honor of someone you know with FPIES to an organization dedicated to creating a better tomorrow for those living with FPIES (more below)

Pies in the face for FPIES 

We saved our favorite awareness-raising idea for last: Pies in the face challenge for FPIES! This genius idea came from I-FPIES, and we personally can’t wait to pie our coworkers (to help raise awareness, of course!). Read more here, but here’s the low-down:

  1. Post a video of yourself being "pied" on the I-FPIES Facebook page or using the hashtag #pieface4fpies
  2. In your video, make sure to:
  • State why you are doing this: to raise money and awareness for FPIES and for National FPIES Awareness Day on May 4th.
  • Name who you are honoring with this challenge.
  • Refer to fpies.org to learn more about FPIES.
  1. Make a donation to help fund initiatives that make a difference in the lives of FPIES patients and families.
  2. Get family, friends and others involved! Nominate 4 more people to complete the challenge in 48 hours!

I-FPIES – The International FPIES Association

I-FPIES, founded by a mom who had a very personal experience with FPIES, is a nonprofit organization that provides education, support, and advocacy for individuals with FPIES and their families. I-FPIES partners with leaders in the medical community to develop evidence-based research, with a focus on early detection and new treatment options. Ultimately, I-FPIES represents families and medical professionals united by a common focus: finding a cause and a cure for FPIES. Learn more about I-FPIES here, including how you can help to support this great organization.

The FPIES Foundation

The FPIES Foundation is a collaborative effort of several families affected by FPIES who want to help other families find their way. The FPIES Foundation is committed to providing support resource to families to make their everyday lives easier. Learn more about The FPIES foundation and view their resources here.

Gee, we should have an FPIES conference!

Wouldn’t it be great if a national conference for FPIES took place the same week as National FPIES Awareness Day? We’ve got news for you: there is one, and it does! If you have a loved one with FPIES, there's still time…

The 2016 FPIES Education Conference takes place later this week, on May 7, in the great city of Chicago. Presented by I-FPIES, the conference brings together parents and caregivers to share experiences and learn the latest about FPIES from leading researchers and healthcare professionals. Read more about this great event here.

How will you help promote and raise awareness of FPIES this year?

-Rob McCandlish, RDN

Read Comments (2)

  • 2016-05-04 | Nikki

    I’m just wondering why Nutricia is supporting FPIES Awareness? Is it for the potential extra income from FPIES parents? Because I have a hard time believing it’s for the support of the families. When my FPIES baby was slowly wasting away in my arms, I reached out to Nutricia for support, as Neocate Infant was the sole source of her nutrition. How supportive was Nutricia? They sent me a sample can. Her formula was $50 for a can that lasted only a few days, and that is all they could muster. So again, how supportive are you?

  • 2016-05-05 | Nutrition Specialist

    Hi Nikki,
      We support FPIES awareness because we think it’s the right thing to do! We’ve heard many, very upsetting stories from FPIES families about what they endured to find a diagnosis, and we want to help great organizations like I-FPIES and The FPIES Foundation to raise awareness. The more the community knows, the shorter the time to diagnosis, and the better the support.
      We’re sorry you weren’t satisfied with our level of support. In recent years we’ve expanded the services we offer families to include the Nutricia Navigator program (they help families access Neocate) and the Neocate Assistance Program. We offer these services (and Neocate samples) to all families who need Neocate, regardless of medical condition. But we’re not perfect! If you have suggestions, please call or send us a note: .(JavaScript must be enabled to view this email address)
      Warm regards,
    Rob McCandlish, RDN

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About Us

Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.