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Awaken and Activate the Mighty X Chromosome

February 2, 2017Research

Did you know an extra copy of MECP2 sleeps within each of our cells? Females have two X chromosomes (XX), while males only have one (XY). In healthy females, a phenomenon called X inactivation randomly shuts off one X chromosome in order to avoid twice as much product from X-linked…

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Of Mice and Rett: Novel Therapeutics & Community Support

January 27, 2017Community, Research

You — the parents, grandparents, and families of children with Rett Syndrome — know more than anyone the devastation that Rett brings and the frustration of not having medications to address the onslaught of symptoms your child faces every day. While I don’t have a child with Rett, I am…

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Small Town, Big Heart

January 4, 2017Community, Fundraising, Success Stories

Hi everyone, so this is my very first blog! Ugh, Rett Syndrome! So after going through day-to-day life with Rett syndrome, you sit back and think, well now what? Do we just sit here and wait for a cure? For our family, sitting back and doing nothing wasn’t an option. We…

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The Joy and Ache of the Holidays

December 20, 2016Community

I want to join Monica and our trustees and staff in saying how hugely grateful we are at RSRT for support from so many people. From families that spearhead events, to parents and others who do RettGive campaigns, to state and international Rett organizations and those who work so hard…

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Rare Disease Drug Approval Sparks Controversy

December 14, 2016In The News, Research

New hope for a devastating disease? Dangerous precedent for the FDA? Reactions are polarized to the approval of the new Duchenne muscular dystrophy drug, Exondys 51. Some believe the FDA lowered its standards and caved to pressure from advocacy groups to approve an expensive drug that lacks convincing efficacy data….

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The Phone Call

December 13, 2016Fundraising, Success Stories

Our precious daughter, Zoey, was diagnosed with Rett Syndrome on May 13, 2016 at 21 months of age. Although we knew something had to be causing all of her delays and slow progress, we were absolutely devastated by the news that it was something as debilitating as Rett. At our…

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Gene Editing Shows Potential for Treating Genetic Diseases Like Rett

December 6, 2016In The News, Research

One of the hottest emerging approaches to altering or correcting defective disease-causing genes is called CRISPR/Cas9. In fact, the first human study for CRISPR/Cas9 – a trial for a potential cancer therapy – is being planned by a collaboration of investigators at the University of Pennsylvania and other research centers. The technology…

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