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Posts tagged with: Sma Awareness

Chase Final Round: GSF Officially Entered

January 04, 2010 by Victoria Strong
We have been working really hard getting everything ready for the final round of the Chase Community Giving campaign on Facebook and we are extremely excited to have just submitted everything to Chase for their review. Whew! It feels great to officially start the wheels of this exciting campaign in...
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SMA Carrier Testing Made Affordable

December 11, 2009 by Victoria Strong
Are you pregnant or thinking of expanding your family? We are pleased to have just learned about a special program offered by Athena Diagnostics that cuts the cost of the SMA carrier test, making it an affordable option for families. Because many insurance companies don't cover the cost of this...
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PetitionToCureSMA.com Efforts Working

November 22, 2009 by Victoria Strong
It is working! With collective efforts, PetitionToCureSMA.com is growing -- and quickly. In less than a week it has blown past 77,000 supporters! This is awesome! And, as this petition grows it is not only sending a strong message to Congress, it is raising awareness of SMA. And knowledge brings...
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SMA Research Study Needs SMA Moms

November 06, 2009 by Victoria Strong
I think carrier screening is crucial to increasing awareness of SMA and in both treating and preventing it. And with SMA carrier prevalence as high as 1 in every 40 people, it is high time that SMA joins Cystic Fibrosis as a routine option for potential parents. I know most families impacted by SMA...
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KHFR 89.7 FM Interview About SMA and the Gwendolyn Strong Foundation

October 28, 2009 by Victoria Strong
I'm so proud of Bill. He was invited to do a 15 minute radio interview about SMA and he did great! The "Focus on Issues" program aired on Saturday, October 24th on KHFR 89.7 FM at 12:14 am, 6:44 am, 12:44 pm and 5:14 pm. You can listen to it here:

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PEP Rockin' Halloween

October 27, 2009 by Victoria Strong
Yesterday was PEP's Rockin' Halloween and we had a rockin' time. I LOVE Halloween and I love that PEP has their yearly event the week before Halloween because wearing a costume just once is just not enough!!! And not only did we get to get Gwendolyn all dressed up in her adorable costume and spend...
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GSF's ShopToEndSMA.com Selected as Cause of the Month by We-Care.com

October 19, 2009 by Victoria Strong
Shop To End SMA

We are so, so excited! The Gwendolyn Strong Foundation and our ShopToEndSMA.com project was selected as "Cause of the Month" by We-Care.com. That's more SMA awareness. That's more SMA name recognition. That's more dollars going towards a cure for this cruel disease.
"It's rare to find an...
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Serial Casting Success and City Proclamations

August 26, 2009 by Bill Strong
All in a day's work for our little fighter Gwendolyn...

This morning we took Gwendolyn to see her orthopedist, Dr. Early, to have her serial casting performed. Victoria and I were nervous for her, but Gwendolyn was a trooper as usual -- she actually smiled at Dr. Early through almost the entire...

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SMA Awareness Month; New Petition Video

August 02, 2009 by Victoria Strong
August is national SMA Awareness month and in honor of all of those who have lost their fight and the thousands of children still fighting SMA, we hope this video will help to further SMA awareness. We truly believe that through increased awareness of SMA a treatment and cure become infinitely more...
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KEYT-3 (ABC) "In Focus": Gwendolyn, SMA, and Gwendolyn

July 27, 2009 by Bill Strong

Thank you KEYT-3 (ABC), Santa Barbara, CA and Mike Klan for featuring Gwendolyn, SMA, Sponsor-A-Mile, and the Gwendolyn Strong Foundation on your special "In Focus" Sunday night program. We appreciate your support! Twelve minutes about SMA -- awesome!

Watch HERE
 

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Publicist Extraordinaire

July 17, 2009 by Victoria Strong
Raising awareness about SMA is paramount to us, believing that through awareness a cure becomes infinitely more attainable. So, when we embarked on this trip, we knew we wanted and needed to parlay it into coverage of this leading infant killer. But, garnering media attention is not always easy....
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Bill is iParenting.com's Dad of the Month

May 11, 2009 by Victoria Strong
Anyone who reads this blog regularly knows that Bill is an AWESOME father. I always knew he would be a great dad because he is a thoughtful and loving husband. But, Bill is truly an incredible father -- and not because our daughter is sick -- in spite of it. He is completely and utterly devoted to...
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May Day SMA Benefit Sidewalk Sale - Sunday, May 3, 2009

April 26, 2009 by Bill Strong
Mayday! Mayday! First Annual May Day for SMA Benefit Sidewalk Sale

On Sunday, May 3, 2009 Gwendolyn's Gramma will be hosting the first May Day SMA Benefit Sidewalk Sale in Canoga Park, California. All proceeds will be going directly to SMA research.

She has been busy collecting first-class items for...
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Bill is MVP Dad

April 09, 2009 by Victoria Strong

I'm so, so excited! Bill was selected by SBParent.org as their MVP Dad. I am so thrilled to see him honored in this way because I know he is an incredible father...I get to see it every day. Click here to read the article.
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Gwendolyn Honored

March 15, 2009 by Victoria Strong
Gwendolyn was just given a wonderful honor by the non-profit A FiveOh4 Uplifting. Goody bags were sent to 150 children in the Children's Hospital in New Orleans in Gwendolyn's name. We were contacted by this thoughtful organization and, having been hospitalized multiple times for long periods with...
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The Power of Blogging

March 03, 2009 by Victoria Strong
I am relatively new to the blogging world. I knew about blogs, but I never read them. I didn't really get it because, although it is hard to believe now, I'm actually a pretty private person. In fact, last summer when Bill brought up creating a blog, I balked at the idea. We had just been through...
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TeenCheckup.com SMA/petition blog post

February 24, 2009 by Bill Strong
I recently reconnected with an old childhood friend, Erin, through Facebook. Victoria and I have marveled about how many friends we've connected with through Facebook that we never thought we'd cross paths with again. Erin writes for TeenCheckup.com, a blog dedicated to providing level-headed,...
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Gwendolyn Featured on ScreamingSanta.com

February 03, 2009 by Victoria Strong















A friend of mine recently launched ScreamingSanta.com as a place to post those funny photos of your children with Santa. The aim behind ScreamingSanta.com is not only to share in that holiday time joy, but also a way to raise awareness about childhood illnesses. And they chose to start with SMA!...
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PostSecret PetitionToCureSMA.com Blog Post

January 04, 2009 by Bill Strong

There will probably never be any way for us to know who sent the postcard below to PostSecret, a blog that describes itself as "an ongoing community art project where people mail in their secrets anonymously on one side of a postcard", but we'd like to say a HUGE thank you to whomever did; and...

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Six Degrees of Separation

December 29, 2008 by Victoria Strong

This Christmas, all over English railway stations, the heavyweight boxing champion, Frank Bruno, is featured in an ad to raise awareness about Spinal Muscular Atrophy. As a young boy growing up in London, my dad took up boxing. As luck would have it, his trainer was George Francis, who would later...
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