#dance4Rett

This is embarrassing to post, but it’d be more embarrassing to do nothing. Rettsyndrome.org is launching a campaign to get people involved – Here’s all they ask – Film your favorite dance. Upload it to Youtube or Vimeo. Share it on social media including a ‪#‎dance4rett‬ and dance4rett.org. Ask 3 friends to do the same…

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Ragnar Race

This Friday I’m participating in the Ragnar Race.  That’s an overnight team relay running race.  A team of women run 180 miles in honor of 180 girls with Rett Syndrome.  There are other teams, but, that’s the team I’m on.  It takes them about 28 hours.  It’s impressive and herculaen that people can accomplish such…

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Art Project

Jenny had this idea about showing off Maggie as a strong woman, so we had our friend Eric Guttierez (fka Mav, fka the funky blessed) come over and take some photos.  Here’s a picture from that day – this is Maggie as Amelia Earhart…I’m still working on photoshopping the rest, but I’ll send those out…

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More FUNdraising

I produced a show last weekend called First Act to raise money for Rett Syndrome research.  A bunch of comedians came and performed old dated jokes they don’t get to tell anymore.  Basically, the thought was that with Rett Syndrome, girls lose the ability to do things they used to do.  So, I produced this show around…

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YouTube

Hello family and friends.  I’m not sure you knew about this, but I’ve been keeping a video log of Maggie’s progress as well, a vlog if you will.  I put up videos of amazing things she’s doing and talk about what we’re going through as well – usually with her. You can check it out at…

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Frozen

Frozen has been a bit of a touchstone for us.  When it came out and little girls around the world flipped over it, Maggie didn’t care.  She’s never been able to sit still for long enough to enjoy a movie and it always felt like we were torturing her by trying to get her to watch…

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Back to normal

For the last two months I’ve been back at work which is to say I haven’t been around that much for Maggie.  I’ve missed dinners and breakfasts and therapies and school drop offs.  I feel like she’s growing up so quick and I don’t like missing any of it. It hasn’t been easy to be…

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FDA Update

Over the past couple of months we have been holding our breaths as results from the FDA trail of a drug formerly known as NNZ-2566 were coming out.  This is the drug closest to market for Rett Syndrome and would be the first ever treatment of the actual disease.  Over the weekend, the FDA denied…

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“Go Potty”

We had been potty training when Maggie started going through regression.  We hadn’t made it to wearing panties but she was understanding the concept.  After we were diagnosed, we kept sitting Maggie on the potty. With everything else happening with Rett Syndrome…we kept asking ourselves.  Is it possible to potty train a kid with Rett…

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The waiting game

For the past 45 days, we have been waiting to hear if the FDA was going to approve NNZ-2566 with Orphan Drug Status.  Everyday I (Jenny) have thought about it anxiously, even on days I tried not to think about it, I thought about it. I stalked the Rett family pages, I stalked parents that…

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