Wednesday, December 3, 2014

The FPIES Foundation Exhibits at NASPGHAN

In October, The FPIES Foundation was honored to attend the Annual North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) meeting.

NASPGHAN brings pediatric training and advancements to this yearly conference. We had the privilege of meeting and speaking with several hundred compassionate Pediatric Gastroenterologist Practitioners, Nurses, and Nutrition professionals, while providing them with information on Food Protein-Induced Enterocolitis Syndrome, as well as resources from the Foundation at our booth.   

A welcome reception by Dr.Gold, Pediatric Gastroenterologist at Children's Center for Digestive Healthcare in Atlanta and member of The FPIES Foundation Medical Advisory Board (MAB), opened this three day event on a Thursday evening. The welcome was immediately followed by the opening of the exhibit hall where providers presented their posters and visited exhibits, such as The FPIES Foundation's booth!

We were encouraged to meet a number of practitioners who are aware of FPIES; most knew of it because they had/have a patient diagnosed with it. So many of the practitioners we spoke with echoed our belief that more research is needed for this complex allergic syndrome. These compassionate physicians and health professionals shared their sincere gratitude for the resources and support that the Foundation provides, empowering families and providers. 

We were so happy to have Melissa and Heather, parents of children living with FPIES, volunteer with us to help at the booth! Connecting with other families is always such a special treat! We were also privileged to meet other exhibitors such as the Tube Feeding Awareness Foundation, Nutricia North America, Nestle Nutrition, Abbott Nutrition, Dr. Shar, Frida Baby, Real Food Blends, QOL Medical, Apfed and many others. When touring the exhibition hall, we were very pleased to see FPIES being represented at Abbott Nutrition's Elecare display! 

Saturday's events brought the NASPGHAN Council for Pediatric Nutrition Professionals (CPNP) Nutrition Symposium and Annual Meeting. This included a session dedicated to FPIES! Presented by Dr.Karen Freedle, Allergist at Children's Hospital of Atlanta and Bailey Koch, Registered and Licensed Dietitian at The Children's Center for Digestive Healthcare in Atlanta, this popular session was attended by Dietitians eager to learn more about FPIES and how to help families with their children's nutritional needs.

We were so honored to have been a part of this conference-- building FPIES awareness, sharing Foundation resources, and empowering these multidisciplinary medical professionals that care for children living with FPIES. We hope to continue spreading awareness and resources in future conferences in the coming years!

Tuesday, November 18, 2014

Global FPIES Day Impact!

From the moment The FPIES Foundation announced the day in August to the official proclamation released on Global FPIES Day itself, the FPIES community has been making a great impact for the first Global FPIES Day! Immediately, our community set out to raise awareness in families' hometowns and host fundraisers, assisting the Foundation in building awareness and support to empower families and the medical community on this special day and all year round!

Global Day was established by The Foundation as a day specifically set aside for FPIES, a day to hone in on specific awareness, education and outreach objectives. An “FPIES: Be The Voice” awareness ribbon was developed for The Foundation and Global Day by an FPIES family. The unified colors of teal and orange hold great significance. Teal represents Food Allergy Awareness and Orange signifies strength and advocacy, mirrored in the Foundation logo.

On the days leading up to Global Day, the sharing of the "Be the Voice" Ribbon Frames was astounding! In all, this Facebook album reflects the faces of 220+kids (and advocates supporting them!) from around the globe! Additionally, over the week our social media pages increased in followers, and our FB posts reached over 21,000 viewers!

Awareness was built through your “Share Your 14”efforts in your community, by sharing what Global Day means to your family, and by creating the “Be the Voice” Ribbon frames! Fundraisers raised awareness and funds from events such as: T-fund Global T-shirt sales, Jamberry Nails, Etsy shops, and HP Threads custom designs. Jersey Mikes in James City, North Carolina, set the tone for establishing local awareness! The Cafe Press-FPIES Foundation storefront and Bravelet sales demonstrated the FPIES community's commitment to spreading awareness, fashionably!

We were thrilled to see kids getting in the action! There was Vivian and her custom glitter tattoo (made to her request!), and the magnitude of photo shares of kids raising awareness in Global day t-shirts. We “met” siblings creating unique Global Day flags, and were so moved by the actions of countless others! It is so powerful to see such a community of budding advocates! Great work, kids!

Our partners at Sarah's FPIES Clubhouse hosted events all month long, leading up to the big day! From naming the Awareness Heroes (be sure to stop by The Clubhouse and meet Super Sally and Flying Freddy!), to mazes and coloring events created just for the day, the Clubhouse was the place to be for kids in action!

We were excited to see several families sharing their stories in news stories, as well as online and print publications:
·         "I want you to Know about Why My Son Can't Eat", published on the Leaky
·       "Local Couple Seeks to Raise Awareness on Invisible Allergy" published on the Beaumont New
·       Cohen's Story, appearing on WOAY Newswatch

The work doesn't stop here! The Foundation has been following the guidelines set out to establish the day as an officially recognized National Health Observance Day. Please continue to follow our website's “News & Events” and social media postings, as we work with Advocacy representatives assisting this community in achieving this goal. There are always ways for all families and communities to pitch in-- keep posted  to learn how you can help throughout this process and beyond!

Thursday, November 13, 2014

Fall Family Food Allergy Events!

 The FPIES Foundation has participated in several food allergy awareness events this fall! 

On September 13th The FPIES Foundation was once again honored to provide families with FPIES information on at Boston Zoo on a day for families living with Food Allergies sponsored by Boston Children’s Hospital FACET program. 

October, along with sponsoring Global FPIES Day worldwide, brings us raising awareness locally in Massachusetts and Minnesota! 

On October 5, 2014, we were honored to be among the exhibitors to have a booth at the FARE Walk in Boston.  Amanda LeFew, Co-Director of The FPIES Foundation, greeted families and raised awareness to Food Protein Induced Enterocolitis Syndrome, a different type of Food Allergy. FPIES Foundation Volunteer, Victoria Warren, Emceed the event and Medical Advisory Board Members Dr. Lee, Dr.Yuan, and Dr. Shreffler were in attendance and met up with a large group of FPIES Families!

October 11, 2014, The FPIES Foundation participated in The FASGMN Food Allergy Resource Fair for the 4th year. Joy Meyer, Co-Director of The FPIES Foundation was on hand to raise awareness to FPIES, and included providing CheeCha Puff samples, donated by our partners at CheeCha puffs!

The FPIES Foundation is committed to building awareness, education and support to families affected by Food Protein Induced Enterocolitis Syndrome, our shoes may be small but our steps will be big! We wrapped up this season of awareness by participating as an exhibitor in the NASPGHAN conference in Atlanta! Truly, a big step--- the FPIES Foundation was the first FPIES advocacy non-profit organization to participate in this esteemed National Pediatric GI conference! Watch for future posts about details regarding this successful event!