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Posts tagged with: Gwendolyn Strong Foundation

Thank you for helping promote our petition!

September 12, 2008 by Bill Strong
We have been humbled by the number of publications and blogs that have embraced Gwendolyn's story. We would like to thank a few of them for running stories on her journey, SMA, and our petition. Thank you for your help to end this horrible disease!

You can click on any of the links below to go to or...
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15,000 Petition Signatures and Counting

August 19, 2008 by Bill Strong
Yesterday, we rounded the corner on 15,000 signatures. We've had
supporters from all 50 states and over 65 countries around the world.

This week FightSMA is using the data from the petition to go
specifically after U.S. Senator support...

Sent from my iPhone

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Awesome PEP Moms

August 12, 2008 by Victoria Strong
I am once again blown away by the kindness of others and their willingness to go above and beyond for us. Over the weekend a group of PEP mothers, the parent group I was in before Gwendolyn became ill, got together and hosted a booth on State Street. They passed out fliers, spread awareness about...
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10,000+ Petition Signatures in 19 Days

August 02, 2008 by Bill Strong
Our initial goal of 1,000 signatures was surpassed in 4 days and now we've accomplished our second goal of 10,000 signatures in under 3 weeks. Next stop -- 50,000!!!

We've received signatures from 45 countries around the world and all 50 states. Here's the updated state rankings with a lot of...
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PetitionToCureSMA.com Video

July 27, 2008 by Bill Strong
We created this video to promote PetitionToCureSMA.com online. As always, please feel free to pass the video link on to anyone that you think would be interested -- but -- only if they'll agree to sign the petition and send the petition link on to at least 100 friends smile

Click here to see the...
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7,000+ petition signatures in 16 days!!

July 27, 2008 by Bill Strong
We now have received over 7,000 petition signatures from 44, yes 44 countries around the world and all 50 states. The state and country rankings didn't change this time. Keep up the good work promoting the petition to your contacts.
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Petition to Cure SMA and SMA Treatment Acceleration Act

July 26, 2008 by Victoria Strong

Congratulations! Our collective efforts are paying off!!! With your help, we have received over 6,200 signatures. And it is MAKING A DIFFERENCE. We are working closely with FSMA and FightSMA who are leading the charge on Congress on behalf of the SMA community. This week during their trip to DC,...

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6,100+ Petition Signatures in 13 Days!!!

July 26, 2008 by Bill Strong
We now have received petition signatures from 41 countries around the world and all 50 states. Although the country rankings didn't change, Pennsylvania and Texas are new members of the top 5 states list. Here's the updated rankings:

Top 5 States
  1. California
  2. Ohio
  3. Texas
  4. New York
  5. Pennsylvania
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Victoria "spotlighted" on SBParent.com

July 24, 2008 by Bill Strong
Click here to read "Mom On The Move - Victoria Strong"
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4,000+ petition signatures in 10 days!!!

July 22, 2008 by Bill Strong
Ten days into it and the petition has gathered over 4,000 signatures from 34 countries and all 50 U.S. states. There's also been some movement in the top 5 countries and states:

Top 5 Countries
  1. United States
  2. Italy
  3. Canada
  4. United Kingdom
  5. Belgium
Top 5 States
  1. California
  2. Ohio
  3. Florida
  4. New York
  5. Alabama
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2,500 petition signatures!!!

July 20, 2008 by Bill Strong
This is truly amazing to me. The petition has gathered 2,500 signatures in just over 7 days with signatures from 26 countries and all 50 states in the United States. For all of you stats junkies (what can I say, I'm a numbers dork at heart), here are the top 5 countries and states:

Top 5 Countries
    ...
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Humbled and Grateful

July 15, 2008 by Victoria Strong
Bill and I are continually humbled by the outpouring of support and love for our little girl. Throughout the last few devastating months, we have been continually uplifted by the kindness and selflessness of others. We have received beautiful letters and emails, delicious homemade meals, handmade...
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SMA Treatment Acceleration Act - We need your help!!!

July 04, 2008 by Bill Strong
Dear Family and Friends of Gwendolyn:

Although relatively unknown, Gwendolyn's disease, Spinal Muscular Atrophy (SMA), is the number one genetic killer of children under the age of 2 and is estimated to occur in nearly 1 out of every 6,000 births. SMA is an inherited disease that destroys the nerves...
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First FDA approved stem cell trials might be in Irvine, CA focused

June 26, 2008 by Bill Strong
A small privately held company based in Irvine, California called California Stem Cell, Inc. (www.californiastemcell.com), may be the first to gain FDA approval on a clinical trial to test embryonic stem cell treatment in humans and SMA would be one of the first two diseases that the company would...
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