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...Read More >>
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...Read More >>
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...Read More >>
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...
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.
#OnComingAliveRead More >>