Wednesday, August 31, 2011

"It's Not Common, But it is Possible. . . "

"It's not common, but it is possible"--- a statement far too many of us have heard and a statement that far too often leads to no answers and dead ends in our children's medical treatment and diagnosis. But today, this statement has a positive twist, as I am pleased to announce the launch of The FPIES Foundation.

It's not common that parents across the nation and often across the world can share the connections that we as FPIES parents share without ever meeting. But we do have these connections. Our stories are all different, but somehow all the same, and in our struggles, we have found unity, clarity, and comfort. Today, I invite you to visit The FPIES Foundation and to witness what these connections can build together. It is my belief that this Foundation will serve as a refuge for FPIES families and the doctors who support these families; a hub to find resources and support, all in the name of bettering the standards of care for the children diagnosed with FPIES. For your child and for my B-- for all of our children. It is not common, but truly, it is possible-- there is now a place that we all can call home.

Official Press Release!

FOR IMMEDIATE RELEASE: 5 A.M. EST, August 31, 2011

KENMORE, WA, AUGUST 31, 2011: The FPIES Foundation, headquartered in Kenmore, WA, is announcing the launch of their non-profit organization and interactive web site on Wednesday, August 31, 2011.

The organization's founders identified a dire need for tangible support resources and formed to help overcome the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.

Food Protein Induced Enterocolitis Syndrome is a rare, non-IgE mediated food allergy of the gut afflicting infants and children. A delayed reaction occurs (~2hrs or more) after ingesting the culprit food. Classic symptoms include profound vomiting, diarrhea, and dehydration. Symptoms can quickly lead to lethargy and in severe cases, septic-like shock. Little is known about this rare disease and currently no known causes, cures, standardized tests or treatment plans exist for FPIES patients. The FPIES Foundation will offer families interactive resources such as an online support forum as well as the opportunity to participate in an FPIES Food Survey project. A library of medical literature links and patient education tools will be provided for doctors.

The FPIES Foundation is comprised of eight board members nationwide, all of whom currently have children with FPIES. The foundation's goal is to collaborate with families, medical professionals, and partnering organizations across the globe to improve the lives of FPIES children, present and future. "Our foundation is a symbol of empowerment for all, a place where you can feel a sense of community and nurturance.“ Brenda Incarnato, Founding member and Chair

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