Tuesday, October 15, 2013

Allergy Friendly Halloween!

October brings Fall, Harvest Activities and Halloween!

We have compiled a list of  idea's some parents of children living with FPIES like to celebrate a safe and allergy friendly Halloween.

  • Pre-assembled treat bags! Make your own treat bags (safe candy or non-food treats) and pass out these pre-assembled treat bags to your neighbors ahead of time.   When your little trick-or-treater shows up, they'll get their special, safe, treat!

  • Non-food treats!   Go to Mommies of Miracles Trick or Treat page and help start a new trend in your neighborhood and encourage neighbors and friends to pass out non-food items (along with or instead of candy) to trick-or-treater's!  Mommies of Miracles has these great suggestions to make Halloween fun available to ALL kids: http://mommiesofmiracles.com/halloween/ complete with a decal to print, a map to find participating neighborhoods and non-food treat idea's.

  • Stay home and participate! Dress up and hand out non-candy prizes!  If your little one is too little to trick-or-treat, staying home to greet trick-or-treaters can be a fun way to participate in the traditions!

  • Donate! Trick-or-treat and donate the candy to dentist to send to the troops, such as through Operation Buy Back.

  • Candy Trade! Explain beforehand to your trick-or-treater that they will have the chance to trade, or 'sell' their candy collected to you for a "prize" (something special they enjoy). 

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

Monday, October 7, 2013

A Roaring Good Time! FPIES Families meet at Boston's Franklin Park Zoo.

Families living with FPIES were offered a rare treat in Boston, the chance to meet each other face to face and ask Allergy experts questions about the latest research and treatments available!
Boston Children's Hospital Hosted the event on Saturday, September 28, 2013.   It was free to any family with a child suffering from food allergies.   More than 300 families registered for the event and rare allergies such as FPIES and EOE were highlighted alongside the more common IgE-mediated allergies.

The FPIES Foundation table was a busy and popular meeting spot! The Foundation is thrilled at the response and enthused at how many families stopped by to say hello and introduce their little ones. It is also rewarding that many people from the food allergy community who never heard of FPIES before stopped by our informational table to learn more.  Amanda Lefew, Co-Director of The FPIES Foundation, was on hand to distribute informational packets with Label Reading Tutorial, Baking and Substitutions list, and flyer's...all available for reference and print out on the Resources page of the website.

We also loved learning from some of these other organizations like "No Biggie Bunch" and "Allergy Home" and encourage you to also check them out!
Medical Professionals from Boston Children's Hospital Food Allergy program spoke throughout the day.   Dr.John Lee and Tara McCarthy MS,RD,LDN of The Foundation's Medical Advisory Board hosted talks and answered questions. 
The best part of the day was the pure joy on the children's faces.  One mother told us her 3yr.old didn't believe other children had FPIES and that is why she wanted to bring him out.  Many families ended their day together on the zoo's playground, enjoying chatting and watching their children play and run around.  A moment where kids were just kids, and families realized they are not alone.

This article is 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.

Tuesday, October 1, 2013

Find FPIES Support on the Foundation Forum

Any time someone has a chronic health condition, they are usually encouraged to join a support group. Such groups have a reputation for encouragement, empowerment, and education, and those things are vital to the survival of a major health concern.

FPIES is no different. Living with FPIES can be confusing, overwhelming, and isolating. A support group can really help alleviate the pain of suffering FPIES alone.

With FPIES, though, it’s very difficult to find a local support group. It can be a challenge for many FPIES families to find a geographically accessible doctor that understands this disease; harder still is discovering someone else in your area to meet up with who knows about or suffers from FPIES.

Meeting with a traditional allergy group can sometimes work, but because FPIES and traditional IgE-mediated allergies operate so differently, such a group will not fully meet the needs of an FPIES family.

Because of this, many FPIES families turn to the internet for support. There are some very active and amazing groups on Facebook and BabyCenter that provide many of the comforts of an in-person support group, but did you know that the FPIES Foundation has a Support Forum that provides the same?

Many people choose not to participate in social media, and for an FPIES family that eschews Facebook and other social media outlets, finding support can be tricky. We would encourage those families especially, and all FPIES families in general, to visit our Support Forum for help, questions, and encouragement.

There are many active participants on the Forum, and FPIES Foundation Volunteers check in frequently to address any questions that need more detailed answers.

There’s no need to walk the FPIES walk alone! Find the help you need at the FPIES Foundation Support Forum.