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Posts tagged with: Video

Advocating for the Affordable Care Act: Gwendolyn’s Story (Video)

July 20, 2011 by Bill Strong

Over the last several years, we haven't shied away from lending our voices to advocate on behalf of injustices we have faced. Most of these injustices, if not all, are sides to issues that we may have never become aware of had it not been for the life-altering reality of Gwendolyn's Spinal Muscular...

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Little Star and Gwendolyn in Santa Barbara News-Press

April 13, 2011 by Victoria Strong

You all know that Little Star is Gwendolyn's animal BFF. She loves him so much and he loves her. I've written about them here, here, and here.

We are so lucky that Diane (Little Star's Mommy) is such a dear friend. She always includes us and she always, always makes Gwendolyn feel special. We met...

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A Good Laugh

March 29, 2011 by Victoria Strong
[caption id="attachment_5274" align="aligncenter" width="300" caption="Photog credit: YummyMummyKitchen.com"][/caption]

I need a good laugh. Don't we all? Having a good laugh just seems to help me refocus... look at things in a new way... let off steam. A good laugh makes my heart smile and I think...

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A Dream Come True

March 11, 2011 by Victoria Strong

Firstly, thank you all so much for the many birthday wishes. You really made me feel special and cared for -- and your messages, cards, and Facebook posts meant a lot to me (although Bill said I was clogging up his fb feed smile)!!! I have to say that this may have been the best birthday ever. 

Bill...

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New Awesome SMA Resouce: InsideSMA

February 13, 2011 by Victoria Strong

The Gooden family has been hard at work creating a really incredible resource for SMA families -- InsideSMA. I always love when families come up with something new and innovative to help others!!! The tips, tricks, and advice on here are really wonderful. Everything from how to prepare for and...

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Good Things For Gwendolyn: Weekly Gramma Visits

February 11, 2011 by Bill Strong
Not unlike the connection I have with my Mom, Gwendolyn and her Gramma have an extremely unique and special bond, too. We've written about it before, but Gramma happily drives 80 miles each way from Los Angeles to Santa Barbara every week to spend time with Gwendolyn and help us out around the...
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Our Power Chair Superwoman

January 18, 2011 by Bill Strong

Today was an incredible day for us and for Gwendolyn. Her shiny new power chair has been in for about a month, but we've been tweaking and fine tuning the set-up weekly so it fits perfectly and provides her the best positioning to drive independently. There are still more tweaks to be made, but...

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Gwendolyn’s Story on the Floor of Congress Yesterday

January 07, 2011 by Bill Strong
Over the years we've been pretty outspoken about our experience with health insurance and our health insurance provider, Health Net (see past postshere,here,here,here, andhere), and our thoughts on the health care reform legislation that was passed in 2010 (see the article on our family in theNew...
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Racing to End SMA!

January 04, 2011 by Victoria Strong

A few days ago I told you about the upcoming New Bedford Half Marathon on March 20th. And since that post, a dozen new people have joined the team! So the number is now over 40! 4-0 all running on one day, in one race, to help end this brutal disease!!!

Running for a cause is nothing new -- in...

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It Arrived!!! Let the Adventures Begin!

December 22, 2010 by Victoria Strong

Yep...it's an extra special, super duper, really big, awesome, stupendous surprise... just in time for Christmas! Gwendolyn's POWER CHAIR ARRIVED! EEEEEEEEEEEE! Yipee! Yipee! We are pretty darn excited around here...but most importantly, Gwendolyn is OVER. THE. MOON!!!

Yesterday all three of us...

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Good Things: Monterey Bay Aquarium With Hayden

December 17, 2010 by Victoria Strong

Oh we have some pretty big "good things" this week with numero uno being that Gwendolyn is doing well! We are still watching her closely and hoping napping and diet changes will boost her energy level back up. We've been taking it easy since we got home and "Nap Boot Camp" has officially started....

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Snow At The Santa Barbara Zoo

December 06, 2010 by Victoria Strong

We had an AWESOME day yesterday! Awesome! And we needed it. The Santa Barbara Zoo hosted their annual "Snow Leopard Festival" (you may remember we went last year). The Santa Barbara Zoo actually trucks in piles and piles of ice to create snow for a one day really special event. They build a...

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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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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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Gwendolyn a Phillies Fan Thanks To The Schmid Family

November 03, 2010 by Victoria Strong

Our friends Hillary and Keith Schmid, parents to twins Zane and Avery, are amazing. Their determination and take-the-bull-by-the-horns spirit continually motivates us. There are just certain people in the world that see an issue and, instead of complaining about it, are stirred to action. And that...

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SMA BLOG PARTY: This is SMA

September 16, 2010 by Victoria Strong

Today is the first ever "SMA BLOG PARTY!" Thanks for joining us by reading about the #1 genetic killer of young children, posting about this cruel disease, and sharing the links with others. The idea of the "SMA BLOG PARTY" is simple -- bloggers come together to 1) Talk about SMA, 2) Put a face to...

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Gwendolyn’s Birthday Bonanza: $36 for 36 Months

September 07, 2010 by Victoria Strong

Birthday bonanza is beginning! Hold on to your hats!

Can you believe it? Our little girl is turning 3!!! And we are celebrating all month long leading up to the official big day -- October 4th! One month away!!! We are cheerleading all 36 very special months!!! And we hope you will join in!

We are...

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Kindness

August 27, 2010 by Bill Strong
In all of the sadness and the grief that comes with SMA...in all of the frustration with having to fight for so much while sometimes barely holding on...in all of the years we've now lived with this disease -- the kindness of others continually amazes us and leaves us simply speechless. Sometimes...
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Fun Visit With Family

August 26, 2010 by Victoria Strong

We had so much fun visiting with my sister, brother-in-law, and nephews...and Grandpa came over, too. They are the best and there is nothing like laughing the night away with them. And Gwendolyn loves being read to, smothered with hugs and cuddles, kissed, tickled, and taken on fun adventures with...

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Our Counting Queen

August 08, 2010 by Victoria Strong
Gwendolyn loves to count everything -- and I mean everything. How many stairs we go up, how many we go down. How many dolls on her bed, how many cars on the street. How many of just about everything we see. And oh boy counting can save the day when I have a fussy preschooler on my hands! Going down...
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