August 18, 2009

Tweet for a cure to end SMA

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Gwendoyn

JD LasicaThe Gwendolyn Strong Foundation is among the new breed of foundations making creative use of social media.

Founder Bill Strong, whose 22-month-old daughter, Gwendolyn, has a terminal, degenerative disease called Spinal Muscular Atrophy. Bill writes in to tell us: “SMA is the leading genetic killer of children, yet almost completely unheard of. There is currently no treatment and no cure, but there is hope as researchers have publicly stated that a cure is attainable in the next five years if provided the resources. As you can imagine, it is our mission to raise awareness about SMA and help put an end to this horrible disease.”

“SMA is the leading genetic killer of children, yet almost completely unheard of.”

One way Bill and the foundation are raising awareness is through their inventive use of Twitter. They built an app — http://EndSMA.org/twitter — that allows users to have the foundation tweet the person’s Congressperson when he or she enters a zip code. The tweet encourages legislators to co-sponsor legislation currently in Congress, the SMA Treatment Acceleration Act, sponsored by Rep. Patrick Kennedy, D-RI, and its counterpart in the Senate, S. 1158. (See the news announcement.) The legislation, if passed, would lead to research to put an end to SMA.

Plunk in your zip code and give it a try. 07407 spits out Twitter IDs and hashtags for:

@senatormenendez – Sen. Robert Menendez (D. NJ)
#RepStevenRothman (D. NJ)
#SenFrankLautenberg (D. NJ)
It is important to me that you cosponsor the #SMATreatmentAccelerationAct, H.R. 2149 & S. 1158!

(As it happens, my zip code, 94588, didn’t work — possibly an incomplete API dataset from Sunlight Labs, but Bill says, “We’ve had over 1,400 people Tweet their Congresspeople through our app reaching over 1,000,000 followers and this is the first time we have heard of any zip code issues.”

The foundation has also started a very effective online petition — http://PetitionToCureSMA.com [link may no longer work] — in support of the legislation. It has received nearly 70,000 signatures to date.

And the foundation’s website points you to this great slide show on Photobucket, which you can embed into your own site.

Says Bill: “Give Tweet For A Cure a try and tell me what you think. August is SMA Awareness Month and we’d be thrilled if more people would spread the word about Tweet For A Cure.

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JD Lasica, founder and former editor of Socialbrite, is co-founder of Cruiseable. Contact JD or follow him on Twitter or Google Plus.

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