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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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On Coming Alive

February 14, 2016 by Victoria Strong

The On Coming Alive project is launching. And I am so honored to be among 72 writers talking about grief. Really talking about grief -- without taboo and without fear. All of us are experiencing deep grief. And all of us believe this should be talked about.

#OnComingAlive

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Helping Children Grieve

February 11, 2016 by Victoria Strong

Children experience deep grief - just like adults. They don't always have the emotional tools to process it all or even express what they are feeling (and let's be honest, adults often don't either). But what I've found is that children really need permission to grieve. Adults can be afraid of...

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