Friday, May 16, 2014

Be the Voice!

May is National Asthma and Allergy Awareness month!

In 1998, the Food Allergy & Anaphylaxis Network, now Food Allergy Research and Education Foundation (FARE), created Food Allergy Awareness Week (FAAW) to educate others about food allergies, a potentially life-threatening medical condition. This year, FARE has declared the entire month of May Food Allergy Action Month!  We invite you to use this month to help us continue to build awareness with us for Food Protein-Induced Enterocolitis Syndrome (FPIES).

In honor of this week, we are releasing the latest survey as part of our ongoing partnership with the NIH-funded Connect program through Patient Crossroads. Once again confirming The FPIES Foundation's commitment to furthering research for this little understood diagnosis.  

This week, we have invited you to join us and ‘Be the Voice’ for FPIES during Food Allergy Awareness Week in your community with our awareness tools and by joining in our social media campaigns.  

Remember-- raising awareness does not have to be elaborate or involve planning large events. Raising awareness can be simple and start with a single conversation. It starts with ONE. ‘Be the Voice’ to increase FPIES awareness!

One can:

Our voices together will educate, empower, and connect; our united voices will advocate for change and call to action in order to truly impact improved standards of care. Help those affected today and tomorrow! It starts with one, it starts with you. 

Read how Your Voice: can be a part of inspiring FPIES research!  Let's Connect all of our voices through the FPIES Global Registry today!

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

Thursday, May 1, 2014

Kids in Action: Meet Sarah!

She’s 9-years old. She loves the A-Team and Selena Gomez. And, she has FPIES.

Meet Sarah from “Sarah’s FPIES Clubhouse.”

We recently had the opportunity to interview Sarah and her mom and learned that Sarah is one courageous little girl with a huge heart, a love for animals and a desire to help others.

The Clubhouse came about as Sarah’s mom, Jenn Booth, watched her daughter struggle physically and emotionally with FPIES. Jenn says, “If I had to choose the hardest part for me, I would say it is trying to help her feel normal in a world that revolves around food. She had never met another kid like herself and could not be convinced that she was "normal". After all she was the only one in her class who couldn't eat what the other kids ate. . . She started calling herself a freak.”

Jenn knew something needed to change and asked Sarah if she’d like to “meet” other kids, just like her. Soon, they launched “Sarah’s FPIES Clubhouse” on Facebook.
Sarah says her favorite part about the Clubhouse is, “hearing other kids stories. . . knowing other kids like me makes it easier. ” She wants other kids on the FPIES journey to know you can, “start out slow and you will be able to add more foods later.” She reminds these children that if they ever feel alone, she will “be their friend.” “When I talk to friends from the clubhouse,” she adds, “we don't talk about food, we talk about Legos!”

As it approaches its one-year anniversary (in May!), “Sarah’s FPIES Clubhouse” has almost 250 members on Facebook, to date. It welcomes anyone affected by FPIES who wants to show support for these children and their families. Clubhouse members participate in a lot of fun activities from 2-minute dance parties to getting a visit from “Flat Stanley” in his travels. Clubhouse members look forward to “Food Pass Friday,” celebrating triumphs together. They also celebrate birthdays, including sibling birthdays, understanding that FPIES can affect the entire family, not just those with the diagnosis.

Jenn says Sarah is stronger than her and has taught her a lot, saying, “Sometimes little people have a greater understanding of the world than you think.”

Sarah says she wants other kids to know that they can make a difference too. She says all they have to do is, “be nice to other people and help them understand.”
And as for life with FPIES? Sarah says, “Watch out FPIES, I'm in it to win it !” Powerful words from an amazing little girl who uses her strength to help others.

About Sarah’s FPIES Clubhouse:
Sarah’s FPIES Clubhouse is inspired by Sarah, FPIES Kids Ambassador living with FPIES, and created and organized by her mother, Jenn Booth, FPIES Advocate and Volunteer Board Member for The FPIES Foundation to provide an avenue of support and community for kids and serve to build awareness for others to understand what living with FPIES means to the kids affected daily by this allergy.
Please note: in efforts from Sarah’s FPIES Clubhouse to provide a safe kid-friendly environment, the community is a private and confidential Facebook group (posts made cannot be seen on your facebook wall).   Please post questions and news in the group where all can benefit. Please keep in mind, facebook is a social media outlet that operates independently from Sarah’s FPIES Clubhouse and The FPIES Foundation; and while all posts are private, they are Facebook property and public record.  

This article was written and interview conducted 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.