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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...
Read More >>Little Star and Gwendolyn in Santa Barbara News-Press
April 13, 2011 by Victoria
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...
Read More >>A Good Laugh
March 29, 2011 by Victoria [caption id="attachment_5274" align="aligncenter" width="300" caption="Photog credit: YummyMummyKitchen.com"]
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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...
Read More >>A Dream Come True
March 11, 2011 by Victoria
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 
)!!! I have to say that this may have been the best birthday ever.
Bill...
Read More >>New Awesome SMA Resouce: InsideSMA
February 13, 2011 by Victoria
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...
Read More >>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... Read More >>Our Power Chair Superwoman
January 18, 2011 by Bill StrongToday 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...
Read More >>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... Read More >>Racing to End SMA!
January 03, 2011 by Victoria
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...
Read More >>It Arrived!!! Let the Adventures Begin!
December 22, 2010 by VictoriaYep...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...
Read More >>Good Things: Monterey Bay Aquarium With Hayden
December 17, 2010 by Victoria
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....
Read More >>Snow At The Santa Barbara Zoo
December 06, 2010 by Victoria
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...
Read More >>GSF: This is SMA Video
November 30, 2010 by Victoria
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
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...
Read More >>Gwendolyn a Phillies Fan Thanks To The Schmid Family
November 02, 2010 by Victoria
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...
Read More >>SMA BLOG PARTY: This is SMA
September 15, 2010 by Victoria
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...
Read More >>Gwendolyn’s Birthday Bonanza: $36 for 36 Months
September 06, 2010 by Victoria
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...
Read More >>Kindness
August 26, 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... Read More >>Fun Visit With Family
August 25, 2010 by Victoria
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...
Read More >>Our Counting Queen
August 07, 2010 by Victoria 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... Read More >>
