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Posts tagged with: Sma Awareness

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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GSF/SMA Featured In Video By Chase Community Giving

November 15, 2010 by Victoria Strong

Guess which charity is being featured by Chase Community Giving? Yep, the Gwendolyn Strong Foundation!!!

We are really honored that out of all of the hundreds of charities and great causes who have won Chase Community Giving grants over the last year, that they selected the GSF to feature in a...

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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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ONE WEEK LEFT: Beb-e-ssentials Birthday Bash

October 25, 2010 by Victoria Strong

Whew - where did the month go? There is only one week left in October, which means only one week left to be part of Beb-e-ssentials Birthday Bash for Gwendolyn! These fabulous ladies have turned their entire business over to increasing SMA awareness and funding and we are simply blown away by them...

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Jimmie Johnson Pepsi 400

October 15, 2010 by Victoria Strong

On Sunday, Bill, Gwendolyn and I were invited by the Jimmie Johnson Foundation to attend the NASCAR Sprint Cup Pepsi 400 -- the Helmet of Hope race. We were really excited to get to be part of this and especially to thank Jimmie and his foundation for all they have done for SMA and the Gwendolyn...

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Gwendolyn and SMA on NPR!

September 30, 2010 by Victoria Strong

We are beyond excited! NPR or National Public Radio's highly respectedCalifornia Report is airing an interview about Gwendolyn and spinal muscular atrophy (SMA) this Friday and Saturday! The segment will be aired statewide on Friday at 4:30pm PT on over 30 stations and again inSanta Barbara and...

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Samsung Helmet of Hope - Pure Inspiration, Tons of Awareness

September 30, 2010 by Victoria Strong

Whew! What. A. Race. smile

We're not sure how many times we bumped between the #1 and #2 spot over the last three weeks in this contest, but it was probably in the neighborhood of several times daily. A pretty exciting contest indeed! The Samsung Helmet of Hope was literally down to the wire yesterday...

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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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SMA Blog Party: Join Us!!!

September 13, 2010 by Victoria Strong

Yes, an official "SMA BLOG PARTY!" The first ever! What's a "Blog Party"? Simple -- We all come together and post about the same topic on the same day -- in this case Spinal Muscular Atrophy, SMA!

On THURSDAY, September 16th, bloggers will come together to 1) Talk about SMA, 2) Put a face to this...

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Buggy *4474* Proudly Donning GSF Logo

September 10, 2010 by Bill Strong
You may remember back in February 2010 Gwendolyn's Uncle Richard (my brother-in-law) co-piloted the GenRight Off Road *805* buggy in the grueling 2010 King of the Hammers race. He included the "EndSMA.org" URL on his driving suit in support of Gwendolyn, GSF, and the entire SMA community. They...
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Help SMA Win $20,000 in Samsung Helmet of Hope (For More) Contest

September 08, 2010 by Victoria Strong

We are so excited and it's been hard to keep the secret over the last 24 hours! We had a conference call with the awesome folks at the Jimmie Johnson Foundation yesterday morning -- yes, the reigning 4-time NASCAR Sprint Cup Champion and 3-time Brickyard Winner Jimmie Johnson smile --and there is...

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California Supports SMA Awareness

August 29, 2010 by Victoria Strong

We've been so busy working on the "$200K for SMA" campaign that we completely forgot to update about the other wonderful things that have been happening with Spinal Muscular Atrophy awareness and advocacy this month.

The State of California Declares August SMA Awareness Month --> This took a lot of...

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Climb4SMA—Taking the Fight to a New Height!

August 23, 2010 by Victoria Strong

You aren't going to believe the awesome adventure that is taking the SMA fight to a new height! A 22,840 foot height! Yes, that's right...mountain climbing!

You may remember gorgeous Jadon Burks from this post. Well his incredible parents, Tony and Kristin, and their wonderful mountain climbing...

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Children Helping Children Part 1

August 10, 2010 by Victoria Strong
There's something about children helping children...it gets me every time. It makes me both choked up and motivated to see these innocent faces filled with so much determination and certainty. I love it. We are invigorated by their selflessness and their generosity in giving up a toy or a playtime...
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GSF Selected for Jimmie Johnson Helmet of Hope

August 02, 2010 by Victoria Strong

We are so, so excited! We just received news from the Jimmie Johnson Foundation that the Gwendolyn Strong Foundation (GSF) was selected for this year's Samsung Helmet of Hope!!! We are absolutely honored to be part of this wonderful project and beyond thrilled that more people will now hear about...

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National SMA Awareness Month Sweepstakes

July 31, 2010 by Victoria Strong
I was just getting ready to post about this amazing thing author Chris Finlan is doing and let folks know they can still participate in this awesome thing, when I got a call about his newest generous idea! August is National Spinal Muscular Atrophy Awareness Month and to kick things off, Chris...
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Not A Fire Exit Optioned For Film

June 08, 2010 by Victoria Strong

Not A Fire Exit, the suspense novel written by Christopher Finlan, has been optioned for a motion picture! As you may remember, Chris and his Milverstead Publishing have been generously donating a portion of all proceeds of Not A Fire Exit and several other Milverstead publications (The Jeffrey...

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Rubber Duckie…You’re The One!

June 08, 2010 by Victoria Strong
The amazing Beb-e-ssential ladies, Penny and Melissa, have blown us away and we are so excited to share their exciting story! Not only did Penny and Melissa hold a GSF fundraiser, raising over $1,000 through sales of their darling handmade children's accessories, they then extended their GSF...
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To Shave or Not To Shave?

May 10, 2010 by Victoria Strong

I want you to meet our friends, the Zahn family: Noah, Barb, and baby Lucy. Lucy is the most darling little girl and this July she will turn one. And, yes, Lucy has SMA.

On October 14th, Lucy Zahn was diagnosed with SMA Type 1. Within mere months and in the midst of learning to care for a...

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PerezHilton.com Raises Awareness Of SMA, GSF

January 25, 2010 by Bill Strong
We apologize for being a bit silent over the last several days. We've been floored, humbled, numb, overwhelmed (in a good way), celebrating, and recovering from the Chase Community Giving pure madness that consumed our -- and most of your -- lives over the past several weeks. There is so much...
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