Blog Archive 07/2009

Fresh Cement :)

July 31, 2009 by Bill Strong

Shhhhhhh! Don't tell anyone...

We couldn't resist. The sidewalk in front of our house was redone this week. After several top-secret reconnaissance runs by Daddy and a comical misfire (abort! abort!), we waited and waited and waited and waited and waited for those construction workers to leave the...

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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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Call To Action: Write Your Congresspeople To Help END SMA!

July 26, 2009 by Bill Strong

Even if you've already written your Congresspeople

about the "SMA Treatment Acceleration Act",

we need you to write them one more time

to help get this legislation passed!

Earlier this year, the "SMA Treatment Acceleration Act of 2009" was reintroduced in both the United States Senate and United States...

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Life's A Beach!

July 26, 2009 by Bill Strong

Enjoying a beautiful Sunday afternoon together at Shoreline Cafe on

the beach. Rough...
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Acts of Kindness: Santa Barbara Friends

July 26, 2009 by Victoria Strong

We have posted about the wonderful people we know in Santa Barbara before (1,2, 3...) but we are truly, truly fortunate and continually astounded by the kindness and support we receive.

Over the last nearly two years, a core group of Santa Barbara families have made a substantial difference in our...

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KEYT-3 (ABC) Santa Barbara, CA: SMA on "In Focus" special,

July 24, 2009 by Bill Strong
This morning we taped a segment with Mike Klan of KEYT-3 (ABC) for the "In Focus" special that airs every Sunday evening. The segment will include information on Spinal Muscular Atrophy (SMA), our trip, Sponsor-A-Mile, the Gwendolyn Strong Foundation, and PetitionToCureSMA.com.

Thank you Mike for...
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Joy

July 23, 2009 by Victoria Strong
Today was a terrific day. The weather was gorgeous, if a little hot -- although nothing like Texas...or Mississippi...or cut-the-humidity-with-a-knife New Orleans, so I think I will take that back. I got a little pampering in with a new and long overdue haircut. Then Bill and Gwendolyn met me at...
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Gwendolyn's First Freckle

July 22, 2009 by Bill Strong

Left leg, front, just below her knee cap. It's so cute smile
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Possible Solution to the EASyS Stroller Storage Shortfall

July 22, 2009 by Bill Strong
Like us, many SMA families use the EASyS wheelchair stroller from ExoMotion to get out and about. Given what we take out with us we haven't found space on the stroller to be a problem, but we've heard several other families have had issues with the limited storage space in the tray underneath the...
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We're Home: Trip Recap

July 18, 2009 by Victoria Strong

We're home and the old adage is true, there is no place like home (a full size shower feels like such a luxury). But, we are also sad to see this trip come to an end. While we knew this journey was going to be special, it has been more than we could have ever imagined. We have had experiences...

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