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SMAsh Dash Success

October 13, 2017 by Victoria Strong

The SMAsh Dash in Fair Oaks Ranch, Texas was a huge success! For the third year in a row, Rusty and Jessica Hastings gathered runners, walkers, children, SMA families, and companies to help change SMA. As avid runners themselves, creating the SMAsh Dash was a natural fit and their daughter,...

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TEN.

October 04, 2017 by Victoria Strong

My darling big girl, today you are 10. Ten years we are parents. 10 years adoring you.

 

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I am Happy.

September 14, 2017 by Victoria Strong

Gwendolyn drew this. It was her first-grade self-portrait. She chose to include her bipap, her butterfly bow, her long hair and a striped shirt. She also chose the words, "I am happy." This was all Gwendolyn. No guiding or pushing in this direction. Other kids chose things like "I am a...

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Life in the In-Between

April 23, 2017 by Victoria Strong

Life is moving pretty fast these days. Days are full. Nights are foggy. Sleep is limited. And I've been living in the in-between, where illusion and reality blur. I've been here before. Life in the in-between.

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Carrier Screening, Newborn Screening and Why Expanded Access Matters

March 11, 2017 by Victoria Strong

We are so pleased that in their March 2017 publication, the American College of Obstetricians and Gynecologists (ACOG) published two Committee Opinions recognizing expanded carrier screening. Specifically and for the first time, spinal muscular atrophy (SMA) is now recommended to be offered to...

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