Friday, July 27, 2007

Working with the National Fibromyalgia Association!!!

Recently, I had the honor of meeting with the people at the National Fibromyalgia Association ( Have you heard of them? I found them on the website out of total chance, and that's when everything started to unfold.

I plan on working with the organization in every way possible - not only with regards to my racing efforts to raise Fibromyalgia awareness, but to reach out to those who would like to talk about their experiences with this illness. We shared a lot of visions and ideas going forward - and i cannot wait to work on each and every one of them with this great institution.

They have been kind enough to invite me to a global-level media and advocacy training conference in Washington, DC this August, to which I gladly agreed to attend. I will learn how to speak with the media about Fibromyalgia intellectually and correctly (all the fun medical terms, etc.), and learn how to deal with the media in general. I think it would be a great learning experience for me. I didn't expect this level of support and enthusiasm from them - I am so excited about the future!

There is a lot of useful information about FMS on I recommend that you read through it...if you are a patient or a family member, or a friend of someone with FMS, it's almost essential that you read it....they are still building out some sections but this site is set out to be the most comprehensive information and community source. This organization is constantly growing and they have a lot of amazing plans in the future to raise FMS awareness and give patients and their families education and hope. I am just honored to be a part of this.

I will keep you posted on all of this as we go forward....

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