Food Allergy Action Month 2015

Food Allergy Awareness Week (May 10-16th) has recently been expanded to include FoodAllergy ACTION month.  Plus, this year a National FPIES day on May 4th has been included to honor the month of Allergy Awareness. National FPIES Day is in addition to Global FPIES Day, on Oct.14th, established by The Foundation in 2014.  Two days to build further awareness to those living with FPIES!

We know that raising awareness happens every day for a family living with FPIES.  During these days of Food Allergy Action Month, we want to help you be prepared with a few quick and simple ways to share your awareness. We introduce “31 ways in 31 days” : 

1. Awareness IS Action! Start a Conversation today. 
2. Download and distribute “About FPIES” in your community – online and in person!   
3. Share our “Have You Heard postcard”
   
            
4. Visit our FPIES Awareness page to print community awareness cards, rack cards, flyers and more to distribute to teachers, doctors, schools, and providers.
5. Organize an FPIES Recipe Challenge  
6. Change your social media banner or profile picture to “FPIES in a Word” and invite your family and friends to learn what it is like living with FPIES, #AskMeAboutFPIES 
   
   
7. Share our YouTube videos
8. Receive a packet of preprinted awareness materials to distribute in your community. Write to: contact@thefpiesfoundation.org 
9. Share your favorite recipes that you use to cook for your child with FPIES on the Foundation forum. 
10. Color an “FPIES is Rough, But I am Strong” mini book with your child 
11. Have a packet of awareness and educational materials sent to a provider or hospital, simply send us the name/address of where you would like it sent- we’ll do the rest! contact@thefpiesfoundation.org
12. Add the Foundation Support button to your blog or profile pictures.
13. Submit YOUR inspiring story to us at: contact@thefpiesfoundation.org
14. Share the FPIES Q&A page in your online social networks 
15. Learn new ways of becoming an advocate 
16. Contact the local news media and share your story 
17. Share our Label Reading tutorial with new parents in your support groups 
18. Learn and share new cooking tips in our Cooking and Nutrition pages
19. Link to a new resource 
20. Read and share “How to Help an Family Today” 
21. Listen to the Recording: "Advocating for your Child in the Healthcare System” A joint webinar from ThriveRx and The FPIESFoundation 
22. Print and share the “FPIES-at-a-glance Awareness rack card”
    
23. Wear your favorite FPIES awareness gear to spread awareness FPIES. 
24. Design an FPIES awareness poster with your kids to share with their pediatrician's office, take  picture, and share it with us! Kids in Action
25. Talk to a parents' group about your family's experience with FPIES.               
26. Coordinate an Awareness Event!
27. Host a Fundraiser Event!
28. Connect to research on the Global FPIES Patient Registry 
29. Learn updates to the research through Medical Journal Articles 
30. Support our mission of providing education, support and advocacy to families and medical providers and donate today. 
31. Follow our Website, Facebook, Blog, and Twitter for ongoing updates throughout the month!

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

A conversation with Prof. Stefano Miceli Sopo on the importance of a Global FPIES Patient Registry

Prof. Stefano Miceli Sopo works out of the Department of Pediatrics at Catholic University of the Sacred Heart in Rome, Italy. He has co-authored several studies on Food Protein Induced Enterocolitis Syndrome including:

• “Clinical management of food protein-induced enterocolitis syndrome”
•  "FPIES, From Practice to Theory"
• “Food protein-induced enterocolitis syndrome (FPIES) and well cooked foods: A working hypothesis” 
• “Ondansetron for Food Protein-Induced Enterocolitis Syndrome”
• “Chronic Food Protein-Induced Enterocolitis Syndrome Caused by Cow's Milk Proteins Passed through Breast Milk”

Prof. Stefano Miceli Sopo and his colleagues are passionate about FPIES research and the need for a Global FPIES Patient Registry. We recently had the opportunity to speak with Prof. Miceli Sopo who works with a center in Rome that follows and studies FPIES children.

Prof. Miceli Sopo says the most surprising thing for him is that there is still very little research being done on FPIES.  He says even most of the studies that are being done seem to offer only descriptions of case studies and maybe some guidelines.  He says, "We read little about the search for new treatments, to better understand its pathogenesis."  

Prof. Miceli Sopo says one of the most interesting recent aspects of FPIES research has to do with the promising effects of Ondansetron, during the acute phase of FPIES.  Ondansetron is an anti-vomiting medication, typically used to help chemotherapy patients.  He says in twenty of his case studies Ondansetron was administered and seemed to work well.

Prof. Miceli Sopo has made it a goal to create an FPIES registry in Italy and says there is a great need for a Global Registry, like the FPIES Foundation Global Registry.  He says, "It would be a really good thing" to have a central platform that was functional and affordable to provide information to pediatric allergy centers around the world.  He says a global registry would help doctors get on the same page when it comes to diagnosing FPIES.  Prof. Miceli Sopo says, "I believe there may be some differences.  We believe that we need a greater unanimity of behaviors.  The registry will serve to highlight the differences; we will try to eliminate them."

Prof. Miceli Sopo says hopefully a registry can also shed some light of what appears to be a spectrum of FPIES patients who suffer from varying degrees of the condition.  He says, "Just through the registry maybe we can see if there is a phenotype that tolerates small amounts of food, maybe processed in some way, and those who vomit after eating only a few milligrams of the food culprit."

Research of course takes time so Prof. Miceli Sopo says until we have more answers patients should keep an open dialogue with their doctors.  He says if there is any suspicion of FPIES he suggests eliminating the food, even if the suspicion is weak, and to carry out an Oral Food Challenge soon as possible.  Prof. Miceli Sopo says, "We have heard stories of children, who had 6-8 acute episodes before arriving at the diagnosis, it does not seem right."

If you interested in learning more about the Italian FPIES registry write to stefano.micelisopo@gmail.com

To join the FPIES Foundation Global Patient Registry follow this link.  If you've already joined you can instantly see survey and data results by clicking “View Data” here. 

This interview conducted and article written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.

200 Free Custom Wristband Contest!

Raise Awareness to FPIES with custom wristbands! With food allergy and FPIES allergy education and awareness days approaching, wristbands can be a great way to wear your awareness.

We have teamed up with WristbandBros.com to give one lucky family living with FPIES a chance to win 200 free wristbands and a free design consultation! Simply follow this link for all the details from Sean Mulligan of Wristband Bros.: 200 Free Custom Wristband Contest!