Monthly Archives: November 2014

Happy Thanksgiving

  As you know, Katelin and I and many others feel a profound sense of gratitude this year, thanks to the success of the NNZ trial and the on-going IGF-1 trial. But, there are many other things, that I and … Continue reading

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Duncan the Dude and James Westgate the Wonderful

My guess is that few outside the International Rett Community know Duncan Millar and James Westgate. But, I think it’s safe to say they’re our every girl and boy’s uncle. Even though I haven’t “met” them outside of Facebook, they’re two of the … Continue reading

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Celebrating the courage of families battling Rett syndrome

This gallery contains 16 photos.

Originally posted on E/I Balance:
Boston Rett community shares 15 reasons for hope on 15th anniversary of discovery of causative gene A couple weeks ago, I attended an annual gathering of superheroes called “Blue Sky Girls Day.” At first…

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Hope- is Poetry to my Ears

For all those who work at Neuren, worked at Neuren, have anything to do with Neuren, poetry is the best way I know to say what prose cannot really express. N ow I come on bended knee with E xtended hand … Continue reading

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Bumps in the Road

After holding off as long as possible I had to get a splint pending surgery for a partially dislocated thumb, which I hope can be after the new year. This poses quite a few logistical issues, typing with more than … Continue reading

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Brand New Day

Having less than 24 hours to process the events of yesterday, I must say I feel like I am dreaming. Like there is this energy inside me that just doesn’t know where to go or what to do, like I … Continue reading

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Ramblings of an Impatiently Waiting Parent

10 am I woke up at 830 after waking up at 1230 and staying that way until 5. I made coffee and toast, completely normal things… Who the hell am I kidding??? I literally thought “this is the last time … Continue reading

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