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RettGive: Easy, Impactful, Empowering

October 23, 2017Fundraising

I’m not the most tech-savvy person. My wife makes fun of me for fumbling with the TV remote, and my RSRT colleagues have probably good-naturedly rolled their eyes once or twice at my tech-related questions. So when we developed RSRT’s crowdfunding platform, RettGive, I was a little nervous about how…

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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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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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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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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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