SMA/stroke info?

[Guest guest]

Greetings to all, and lots of positive vibes to Alana for a speedy recovery!

My primary purpose for writing is to ask if anyone has any information on SMA

and

strokes. Angie (SMA 2), who used to post regularly here, suffered a

stroke in April

and has given me permission to post to see if there is anyone else with SMA who

has

shared this whammy of a predicament. You can read about the stroke in the last

entry in

her journal - http://www.nof49.ca/angie/basicbio.html. Needless to say, the

doctors are

in a double quandary here, and to say she's feeling discouraged is a gross

understatement. If anyone has experience and/or information about SMA and

strokes,

please send a note to Angie - angie@.... Notes of encouragement would be

most

welcomed, too!

While I'm here, I'd like to remind folks to submit a name for the special

dedication in The

Journey (for more info about the book, just ask!). I have received

permission for

over 1000 names in the next revision; this will help raise awareness that SMA is

not quite

as rare as most of us were led to believe, but it is just a small representation

of this

incredible family. If you have not yet submitted a name, please consider doing

so. All I

need is the name as you would like it listed, including a nickname if desired,

and whether

it belongs in the `honor' (living) or memorial section. If you have some sort of

network

with other SMA families, please share this, as no matter how hard I try, I will

never be able

to reach everyone myself! There are no restrictions, such as number of names

submitted,

dates, ages, location, and don't forget to submit your own name! Thanks so much.

Finally, I periodically email an update of SMA news, announcements, projects,

helpful sites,

etc., that might not reach folks otherwise. There is always so much going on! If

you would

like to be added to the list, just send your email address.

Happy, safe holidays and a terrific, healthy new year to all -

Helen