Wednesday, August 31, 2011

The FPIES Foundation has arrived!

This morning, along with 7 other dedicated moms, I am proud to announce the launch of The FPIES Foundation.

When your child is diagnosed with FPIES, doctors don't have a packet of information to give you or a website to direct you to. It is difficult to find another family to turn to for support and advice. An FPIES diagnosis is isolating and scary, in large part due to the simple lack of information available about it. We hope to change this. We hope that no family struggles alone again, but can find one another, information and knowledgeable medical professionals using our resources. We hope to educate medical professionals so they, in turn, are able to help more families, identify FPIES earlier and avoid additional complications.

I am so proud of what we have accomplished. I am so proud that it aches in my chest... and this is just the beginning. There is so much in the works, so much more to come! It feels WONDERFUL to be doing something so proactive - especially as FPIES is such a reactive condition (feed something to your kid and wait to see what happens). We did this for Genevieve - and for Brendan, Sam, Samaya, Carter, Kara, Bridget and Ellie... and we did this for YOUR FPIES kiddo too. You are not alone!

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