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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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2016: A Year in Review

July 19, 2017Community, Fundraising

Thanks to our almost 9,000 donors we raised a record amount in 2016. We’re putting that money to work on behalf of everyone struggling with Rett Syndrome and related MECP2 disorders. We invite you to view our infographic. Thank you to all our supporters! You can also download the infographic here.  …

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What About Us?

July 12, 2017Research

It’s been almost two decades since the discovery that alterations in MECP2 cause Rett Syndrome. However, the diagnosis of Rett remains a clinical one based on a child’s symptoms and history. While a positive MECP2 genetic test confirms the diagnosis, it is not required. This creates a situation where individuals can…

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Finding the Words

June 26, 2017Community, Fundraising

I told my daughter, Eleanor, the news. I had just put her in bed for the night. Her arms had stopped moving and she was breathing quietly. She stared into my eyes with that intense look that only the parents of a daughter with Rett Syndrome can understand—intelligent, lucid, expressive…

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