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Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,563
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Lost a loved one
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07/2009
Country
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State
CA
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San Jose
Original post was from 2007... much has happened to get the registry moving since then.
 

jamorel

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Joined
Jan 9, 2010
Messages
193
Country
CA
State
Alberta
City
Calgary
I am waiting to hear back from our ALS Society as they have some information on it for me... but I am not sure when I will confirmation on that. It is taking a long time... hence the twitition. I would do a thousand petitions if I thought that would get someone's attention. I think it is important and I am not one to let up on something when I think it is important. I need help though... otherwise I am just a wave in the ocean, which is pretty darn frustrating.
Laurie Pringle from the ALS Society Canada was on a previous thread and she mentioned social media and I agree with her on that one thing: it is an amazingly affordable, powerful medium that simply wasnt available to us a few years ago. If any of you are wanting to further the cause, it is worth learning your way around facebook and twitter at the very least. Find others who share your passion and connect with them... you will be surprised at who you find and what you can do once you get connected.
If you want help or have questions, contact me... I have been living and breathing this stuff for some time now and I think I am getting the hang of it. It is one way to build an army of support and that may be more powerful and useful than anything we could ever create on our own.
And back to the survey... yes we need one, not just for the US but for North America, and yes, it is taking far too long!
 
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