Blog Archive 08/2011

Counsyl Has Generously Donated Free Genetic Tests to Help Raise Awareness

August 28, 2011 by Bill Strong
At the Gwendolyn Strong Foundation, we want as many people as possible to know that 1 in 40 people unknowingly carry a severe mutation in the SMA gene. Getting tested before pregnancy is one of the best ways to make sure that your child does not fall victim to a possibly lethal genetic disease.

And...

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Gwendolyn Update and a Special Visitor

August 26, 2011 by Victoria Strong
Thank you all so much for your thoughtfulness and concern for Gwendolyn this week. Gwendolyn is status quo and we are still very worried...but very hopeful. We are seeing improvements in some areas, but are still waiting in others. There is still uncertainty about what exactly is going on, but...
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Santa Barbara Businesses Support theGSF

August 24, 2011 by Victoria Strong

Santa Barbara and its residents have been nothing but embracing since Gwendolyn's diagnosis with SMA. The support we have received goes well beyond our immediate friends and connections in the community. (And our immediate friends and connections have been awesomely A-mazing!) Friends told friends...

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A rough week, but grateful

August 22, 2011 by Victoria Strong

Gwendolyn has had another rough week. And this weekend was down right lousy. The good news is that from a respiratory standpoint she is healthy -- that is very, very good news for SMA. The bad news is this darn infection (or the problem we can't seem to figure out) just won't go away. It is now a...

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Team Lucy’s Legs

August 18, 2011 by Victoria Strong
Sweet Lucy Zahn has inspired a team of supporters! Her spunky spirit is motivating people to not only learn about SMA, but to get involved in helping end it!

Team "Lucy's Legs" will be riding 90 miles around Lake Winnebago this weekend in Race The Lake 2011. Lake Winnebago is one of the largest...

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Good Things For Gwendolyn: A Wizard Promise Fullfilled

August 17, 2011 by Victoria Strong
Gwendolyn is still having a tough time. She hasn't bounced back the way she usually does after antibiotics and we are feeling a bit on edge (well, we are always on edge, but more so). We are having more tests done to try to get to the bottom of it all, but she just isn't her go, go, go self. So we...
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This is SMA. And this is what incredible looks like.

August 15, 2011 by Victoria Strong

We asked families impacted by SMA to submit a photo and share something they would want others to know about them/their child. And this is what we received. Speechless. Simply speechless.

These families and their stories represent what this disease really is. SMA is far more than its brutal...

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City of Santa Barbara Again Declares August SMA Awareness Month

August 12, 2011 by Victoria Strong

Earlier this week the City of Santa Barbara officially declared August as SMA Awareness Month for the third year in a row. The City of Santa Barbara has consistently been supportive of our efforts to end SMA and Mayor Helene Schneider has always been extremely complimentary and enthusiastic about...

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Cupcakes for Amanda

August 11, 2011 by Victoria Strong

Awesome things are happening around the globe for SMA Awareness Month and some are dee-lish. Sweet Amanda Cardoze just celebrated her 1st birthday yesterday. At just one-year-old she is already a warrior -- a big smiling, pool-loving snuggler. Amanda has SMA.

For the entire month of August Amanda...

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Viva Las Vegas

August 10, 2011 by Victoria Strong
Before unexpectedly driving 5 hours north to Stanford, we had a fabulous planned long weekend 5 hours east of Santa Barbara visiting some great friends in Las Vegas, Nevada. Viva Las Vegas! Whoa, the G-Van is really racking up the miles these days...

Gwendolyn is actually a Vegas veteran. Yep, at...

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