Advances in stem cell science give us hope that we’ll see an end to SMA

Throughout July, we’ll be profiling Charter Community members, people who have signed the Stem Cell Charter and are actively spreading the word about stem cell science. Today, an article by Bill and Victoria Strong, passionate stem cell science advocates who started the Gwendolyn Strong Foundation last year to raise awareness and funds for Spinal Muscular Atrophy research.
Our daughter Gwendolyn was born in October 2007. She was perfectly healthy at first, but was diagnosed with Spinal Muscular Atrophy (SMA) Type I at six-months-old. A genetic disease that affects children all over the world, SMA is currently a death sentence with no treatment or cure.
As parents, it was simply impossible to do nothing. We started the Gwendolyn Strong Foundation (GSF), a nonprofit public charity dedicated to increasing global awareness of SMA and accelerating research toward a cure.
Our primary way of reaching people is through technology and online media, running campaigns to increase awareness and much needed funding. In our first year, we’ve managed to create a strong grassroots community online. We’ve run several Twitter-based campaigns, reaching millions of people around the globe. We were voted to the winner’s circle out of more than 500,000 non-profit organizations in the first Chase Community Giving campaign on Facebook, winning $125,000 for our cause. We created an online petition, garnering over 90,000 votes in support of important SMA legislation currently making its way through the United States Congress.  We’ve directed significant funding to researchers and are proud of what our organization and the broader SMA community has accomplished.
And we’re no strangers to stem cell science. In fact, our fundraising programs have directed over $235,000 in the last eight months to a promising stem cell program at the University of California, Irvine led by Dr. Hans Keirstead. This groundbreaking research, using motor neuron progenitors, is on the brink of human clinical trial in the United States — possibly the first ever of its kind — and has already paved the way for future stem cell projects.
We know stem cell science holds massive promise for SMA and we believe in the power of grassroots movements. This is why we signed the Stem Cell Charter. It represents an important grassroots-based paradigm shift, focused on creating a better understanding and highlighting the dedication of inspiring scientists actively involved in moving stem cell science forward across the globe.
We also know that others needed to know about this important movement. So we’ve reached out to our social network through email, twitter, facebook and our blog, asking our supporters to sign the Stem Cell Charter and spread the word. And when we learned the Stem Cell Charter was up for a Webby award, we were happy to once again to reach out to our network to rally online support. We are strong supporters of what the Stem Cell Charter is hoping to accomplish and are honored to be involved.

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