Blog Archive 08/2010

$200K For SMA: Less Than 2 Months After Launch, Campaign Tops $100,000!

August 30, 2010 by Bill Strong

We think it's time to stop...take a deep breath...take a step back...and reflect on a pretty extraordinary accomplishment by a very special group of passionate people.Think about this for a minute.Less than TWO months afterlaunching our "$200K For SMA" fundraising campaign in support of promising...

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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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SoHo Concert to Benefit GSF 9.3.2010 in Honor of Mia Hultgen

August 27, 2010 by Victoria Strong

We want you to meet Mia Hultgen. Mia just turned 30. She's beautiful, accomplished, kind, and from all accounts a totally awesome person. Mia has SMA. SMA Type III. Doctor's told Mia and her parents that she would be lucky to survive to 18. And yet here she is...living, loving, and preparing to...

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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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Micah March THIS Saturday!

August 25, 2010 by Victoria Strong

So excited for this Saturday! The 2010 Micah March is going to be an amazing evening! Over 175 people are expected!!! And we are going to have a blast!

For those of you who are walking don't forget to collect those sponsors and motivate your teams! And if you haven't signed up yet, you can still...

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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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The Cousins Have Arrived!

August 20, 2010 by Victoria Strong
The cousins and Aunt Elizabeth and Uncle Chad arrived yesterday!!! And we are having an absolute blast already! We love them!

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Therapy and G’s Awesome Therapists

August 19, 2010 by Victoria Strong

Gwendolyn has therapy every day -- on some days twice. The therapy ranges from stretching to play and sometimes a combination of the two, but all of it allows Gwendolyn to experience things she could not without the help of some very special people.

Therapy for SMA children is a challenge. It's not...

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In Memory of Eli, Stephen, and Logan

August 17, 2010 by Victoria Strong
I want to tell you about some very special people. Very special families who even after losing their treasured children keep fighting. It isn't easy. Grief does many things to people. Living in the SMA world, we are witness to grief in its varying forms -- constantly. It impacts the entire family...
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