HelenBaldwin
Registered: 08/05/06
Posts: 7
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Reply with quote | #1 |
My primary purpose for writing is to ask if anyone has any information on SMA and strokes. Angie Wright (SMA 2) 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@nof49.ca. Notes of encouragement would be most welcomed, too, especially since her 44th birthday is Sunday, Dec. 21!
While I'm here, I'd like to remind folks to submit a name for the special dedication in The Jeffrey 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 if applicable! 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
jeffreyb@skybest.com
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Helen Baldwin
The Jeffrey Journey
jeffreyb@skybest.com |
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