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In which my year continues unabated
When M naps, we usually leave the side of his crib down. In that position, it's still about three inches higher than the crib, and there's simply no way he could roll over it and fall. It makes it easier to pick him up and put him down, too, so we've just taken to leaving it like that.
On Tuesday, during naptime, he somehow got his leg hooked over ( Read more... ) -
GoodShop
If you have yet to do some holiday shopping, and you were planning on doing it online, I encourge you to start at one of the following links. Clicking through to retailers from these links will ensure that a small portion of your sale goes to SMA research. It's not a lot, but then, you were going to buy this stuff anyway, right? :)
http://tinyurl. ( Read more... ) -
(Untitled)
M had a doctor's appointment this morning. It went pretty well, though he did end up getting prescribed a body brace. Think of a shell around his torso and you get the general idea. It's for when he gets tired, and it will help support his torso. It's important, though, that he still use and excersize his core muscles, so the brace will only be for ( Read more... ) -
A drug to fix mutations?
This looks like an awesome drug. Especially if it works as advertised. But even if not, it gives faith that every year we'll be a little bit closer to curing some of these diseases...
Posted via LiveJournal.app.
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Fundraiser update
Quick note on our fundraising walk. Thank you very much to everyone who donated and/or participated.
Our group all told raised over $12,000 for SMA research and support. $12,000!
Thank you, everybody, again. Words cannot express how much this means to us.
Posted via LiveJournal.app.
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As an aside
I just wanted to write up a quick aside to say that I am so incredibly touched by all the support (both financial and otherwise) we've gotten from people in this matter. The fact that we have over 50 people (including the kids) in Mac's Pack is simply incredible, and I certainly never expected anything like that. (I'm not sure the event organizers ( Read more... ) -
SMA fundraiser
As I've mentioned here before, in June our son was diagnosed with Spinal Muscular Atrophy, a degenerative recessive genetic condition. There's no cure, and not even a treatment beyond physical therapy (which can keep the muscles strong but can't address the underlying failure of the motor neurons). Federal policy currently forbids federal grant ( Read more... ) -
Lunch plans
OK, one person has said she would not be able to make it to Kendall/Central, and nobody has voiced a dislike of Faneuil Hall. So the Faneuil Hall Bertucci's it is ( Read more... ) -
Madman lunch plans
I have been delinquent about following up on my earlier post for lunch plans with madmanatw.
The plan is Bertucci's. Now, there are two B's to choose from that are relevant to most people. There is one in Faneuil Hall, and one in Kendall Sq. Which one would people prefer?
And what time would people prefer?
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Heads up
Quick heads up: No firm plans are in place, but madmanatw will be in town (Boston) Wednesday evening through Friday morning, and I would like to arrange a lunch gathering for Thursday. If you don't know him, don't feel excluded by any means, but seeing him will be a primary goal of this particular gathering.
More plans as they are worked out...