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Bridging the Divide

October 11, 2017Research

We’ve known for almost two decades that mutations in the MECP2 gene and its corresponding protein, MeCP2, cause Rett Syndrome. During this time a variety of biological functions have been attributed to the MeCP2 protein, but with no clear evidence for how these various functions relate to Rett Syndrome. Years…

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October: Rett Awareness and So Much More

October 10, 2017Community

I think most of us Rett parents compartmentalize our life events according to “pre-Rett” and “post-Rett”, I know I do. In my “post-Rett” life October carries significant importance. First and foremost my daughter Chelsea was born in October of 1996. October 10th to be exact. Today she turns 21 years…

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How Rett Changed a Granddad

October 4, 2017Community, Fundraising

Like other grandparents who faced a diagnosis of Rett Syndrome, I was initially devastated. My granddaughter Magnolia would not have the life I dreamed for her. I wouldn’t see her walk down an aisle or celebrate those typical life events most grandparents get to savor. The impact on my son,…

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Roadmap Update: Jaenisch Lab Award

September 20, 2017Research, Roadmap

In March of this year we announced our strategic research plan, Roadmap to a Cure, the cornerstone of which is four therapeutic approaches that we are undertaking in pursuit of a cure for Rett: gene therapy, MECP2 Reactivation, RNA editing/splicing, and protein replacement. Today’s announcement focuses on MECP2 Reactivation. A…

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Twice the Heartache…Twice the Love

September 9, 2017Community

I have a soft spot for Rett grandparents. Having witnessed my own parents come to terms with Chelsea’s diagnosis I saw firsthand just how painful and raw that journey was. In a sense grandparents bear twice the pain that parents do. They ache for their children and they ache again…

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Marlowe’s Web

September 7, 2017Fundraising, Success Stories

We all have those moments when Rett seems to take over our girls completely. It gets intense and scary. That moment when you aren’t sure if you want to scream out in rage or sit in the corner and ball your eyes out. It was at that moment where our…

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The Rollercoaster of Rett

August 31, 2017Fundraising, Success Stories

Being a special needs parent is a rollercoaster filled with highs and lows, love and heartbreak, blessings beyond measure and so much more. You find yourself flooded with emotions you never knew you would have, such as jealousy of other parents, panic of not researching enough for your child and…

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