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
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
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…
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
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
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
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
Well, yesterday, I and hundreds of other mothers got to know what it feels like to be waiting in the waiting room while someone is in labor and it goes on FOREVER without a result, lol. But, that makes today … Continue reading
Three words that make every thought they follow a commitment. So, today, now that the release of the NNZ-2566 trial results is imminent, I want to take a moment and share some of my “no matter whats” if the answer … Continue reading
Last night, Maureen O’Hara received an Honorary Oscar. I’ll never forget watching The Quiet Man with my Grandpa on St. Patrick’s Day every year. I love the Oscars; I’m a sucker for watching people get their Oscars and being so … Continue reading
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Trail to a Texas Trial 