Monday, July 13, 2009

Activities that "the average person" take for Granted - A Major Challenge for those with FSHD

The Petition is Growing - Let's Make our Collective Voice be Heard!!

You can fill it out the petition online:

Here is one individual's note to President Obama regarding Facioscapulohumeral Muscular Dystrophy research funding -

Dear Mr. President:

This would be a great way to spend stimulus money. You'll be creating jobs here at home while also paving the way to a cure for our version of muscular dystrophy.

I was diagnosed with this disease over 10 years ago. We don't get a lot of press or air time on the Jerry Lewis Telethon because our version doesn't put most of us in a wheelchair. However, that shouldn't diminish the devastation this causes to our bodies. Things that the average person takes for granted become a major challenge for us. (walking, climbing stairs, changing a lightbulb) On top of the physical symptoms, we also have to deal with the mental anguish of knowing that there is not a cure. There isn't even a treatment to slow it down.

One of your campaign slogans was "Hope". That's all we are asking for. With an increase in funding you'll give a vast segment of the muscular dystophy population hope.

Thanks in advance.

It may be naive to think we can move those in Washington, but without trying we will never know - Please join this mission to impact the lives of those with this progressive condition.

With funding so very dear, and so very limited, there needs to be an effort to use our resources carefully & fairly. As you can see by reviewing the research funding history on the National Institutes of Health's website - FSH has received very little financial support.

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