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July 25th: #GoodForGwendolyn

July 13, 2016 by Victoria Strong

And we ask of you to do the same. Honor Gwendolyn's legacy on July 25th by being the good in the world. Donate in her memory. Perform an act of service for someone in need. Gather as a family to find a way to give back together. Brighten someone's day. Remember Gwendolyn and why she moved you...

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Acts of Kindness: Butterfly Bench and Garden at Washington in Gwendolyn’s Honor

June 26, 2016 by Victoria Strong

When Gwendolyn passed away last summer, we knew it would impact the Washington community. But, we definitely didn't fully realize yet just how many people she had touched nor how deeply. We were humbled by how many teachers and families attended her funeral and how many who couldn't sent...

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Acts of Kindness: Research Named For Gwendolyn

May 19, 2016 by Victoria Strong

People continue to amaze us in the many different and wonderful ways they honor Gwendolyn's memory. And it means the world to us. As a grieving parent, it is everything to have our child remembered. E.V.E.R.Y.T.H.I.N.G. Today, the Sacred Cells Research Partners renamed their patented research...

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Time Does Not Heal All Wounds

April 14, 2016 by Victoria Strong

Time heals all wounds. This is a lie.

Time does not heal. Not in and of itself. True healing requires a consciousness and constant work. Every day. For the rest of your life without your child.

I don’t say this because I have now managed to live 8 months without my Gwendolyn, an eternity...

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Announcing our 2016 EIA SMA Research Grantees

April 08, 2016 by editor

We are thrilled to announce our 2016 Emerging Investigator Awards (EIA) research grantees:

  • Dr. Sara Gombash Lampe, The Ohio State University: SMN deficient enteric submucosal neurons and gastrointestinal function in SMA
  • Sarah Tisdale, Columbia University: Role of SMN in cytoplasmic mRNA...
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