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Saving Gwendolyn’s Life—Even at Disneyland

May 03, 2015 by Victoria

What started as a typical fun day this week at Disneyland turned very scary, very quickly. We nearly lost Gwendolyn this time. Every SMA Type 1 family walks this tenuous line between life and death every single day. The margin for error is hairline slim and the most subtle things can cause...

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When the Short Bus is a Gift

April 19, 2015 by Victoria

Gwendolyn rode the school bus for the first time. On top of that, she advocated for this for herself. And, she thought it was totally AWESOME! It was indeed a short bus -- often a punchline in jokes. A source of disappointment. Or fear. But our girl has once again given us a crystal clear...

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Announcing our 2015 EIA SMA Research Grantees

April 09, 2015 by Bill Strong

We are extremely excited to announce our 2015 Emerging Investigator Awards (EIA) grantees: (1) Dr. Melissa Bowerman, University of Oxford, (2) Dr. Erkan Osman, University of Missouri, (3) Dr. Anne Rietz, Indiana University, and (4) Dr. Eileen Workman, Columbia University.

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$25,000 Raised in New Year Gala in Honor of Taysen

January 29, 2015 by Victoria
$25,000 Raised in New Year Gala in Honor of Taysen

The PRAYING FOR A MIRACLE NEW YEARS EVE GALA in Lynden, Washington was a huge success. Inspired by 10-year-old Taysen and his positive attitude, this selfless community turned the typical New Years Eve fun into a night of CHANGE. Over 300 people rang in the New Year for a good cause, raising...

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Eleanora, our Rainbow Baby, Turns ONE

January 19, 2015 by Victoria
Eleanora, our Rainbow Baby, Turns ONE

Our silly Eleanora turned ONE today. And, oh, what a year it has been! A magical, wonderful, challenging, learning, growing year it has been as a new family of four! Eleanora is joyful and silly, curious and eager, and in all her tininess brings levity to the unrelenting ravages of SMA and our...

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