Blog Archive 11/2010

GSF: This is SMA Video

November 30, 2010 by Victoria Strong
We showed this new video at this year's "Golf For A Cure" tournament, but it is one we've been working on for general SMA awareness for some time. We wanted to approach explaining SMA from a slightly new way, do something a little different, and we hope that it has an impact. That's the point. We...
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Thanksgiving Weekend

November 29, 2010 by Victoria Strong

We can only be said to be alive in those moments when our hearts are conscious of our treasures. ~Thornton Wilder

We have had a lovely long Thanksgiving -- a quiet, simple, fun family weekend. And it feels so good! And throughout it all, we were especially conscious of our many blessings! I know we...

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Testing Gwendolyn’s Ambu Bag Before An Emergency

November 27, 2010 by Bill Strong

Let's face it, emergencies are a fact of life for SMA families and we've had our share of urgent medical situations over the years with Gwendolyn -- collapsed lung, regular mucus plugs, power outages, sudden vomit with fear of aspiration, forest fires, battery failures, life-critical equipment...

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Good Things For Gwendolyn

November 24, 2010 by Victoria Strong

GwendolynStrong.com has been a bit heavy of late. And while all of this is going on for Bill and me, we try really hard to not let it be part of Gwendolyn's life. No, Gwendolyn is 3 and should get to be just 3! And like most 3 year olds, the world is her oyster and fun can be found everywhere! So...

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Help Make Your Holiday Purchases = SMA Research Funding

November 23, 2010 by Victoria Strong

It's that time of year! Holiday shopping is now in full swing! Don't let the chance to help end SMA pass you by. There are so many ways your purchases can help garner increased research funding and you can give really special gifts at the same time! We are really honored to partner with so many...

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Thinking of Jonas

November 22, 2010 by Victoria Strong

On Thursday night we learned that our dear sweet special friend Jonas Coleman had passed away -- a gorgeous blue-eyed almost 3-year-old darling little boy. Tomorrow is his funeral. And we are heartbroken.

And while I try to sit with the thoughts of him now being able to run free, of him no longer...

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Calling All GSF Supporters—We Need Volunteers!

November 21, 2010 by Victoria Strong

Okay Team GSF, we need your help! You remember that GSF was selected as the sole recipient of this year's beautiful Hope Calendar? And I know many of you have already purchased one for yourselves (thank you!). Well, Hope Calendar photographer Debi Gomez was able to present a $10,000 check to last...

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2nd Annual “Golf For A Cure” A Huge Success!

November 21, 2010 by Victoria Strong

Last Friday, we hosted GSF's 2nd Annual "Golf For A Cure" tournament at Sterling Hills Golf Club in Camarillo, California and it was a whopping good time and a huge success -- raising over $15,000 for our "$200K For SMA"fundraising program in support of promising SMA gene therapy research! The...

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Fun With SMA Friends

November 18, 2010 by Victoria Strong

Ahh what a weekend! It was awesome!!! GSF's Golf For A Cure was held on Friday (more on that soon) and we were so, so excited that several of our SMA friends came into town to support it and spend time with us. The Calafiore's, Chris and Jennifer, and their darling daughter, Hayden, stayed at our...

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Incredible Weekend With The Burks Family

November 16, 2010 by Bill Strong

Two weeks ago, I had the pleasure of flying out to Kansas to meet the Burks family and attend their inspiring Climb4SMA kickoff event. It's never easy to leave Victoria and Gwendolyn -- and I so wish they could have gone with me -- but I was honored that Tony and Kristin Burks invited me to be...

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