Tagged: ALS, ALS Awareness, pALS chat, SOD1
- This topic has 17 replies, 11 voices, and was last updated 9 months, 2 weeks ago by
James A Gans.
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May 5, 2021 at 7:16 pm #18722
Amanda
KeymasterWho is interested in attending the virtual get together? I’m excited to “meet” our members. This is the first time Dagmar and I get to host a gathering for our community. We definitely know that some of our members have difficulty speaking because of ALS and we are encouraging people to also use the chat box if they prefer. If you don’t want to post a comment, than of course we will take our time and make sure everyone is heard. I’m just curious what to expect for the meeting. Do you like this idea?
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This topic was modified 1 year ago by
Amanda.
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This topic was modified 1 year ago by
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May 6, 2021 at 5:11 pm #18742
Dagmar Munn
KeymasterYes, this is exciting news here in the forum. To read what’s happening on May 12th go to this post:https://alsnewstoday.com/forums/forums/topic/als-awareness-month-forum-member-zoom-call/
We hope you will join us!
And like Amanda said, don’t worry about your ability to speak – – I’d love to “see” you and wave to you. Besides, my speech isn’t the best either… but I’ll try. (and there’s always the Chat Box to type your comments)
Any discussion suggestions? Or, leave it up to Amanda & me, and our creative minds 🙂 🙂
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July 24, 2021 at 11:36 am #20014
Cheryl Teribury
ParticipantHi Amanda,
Have you started these virtual meetings? I would like to participate.
Cheryl
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July 24, 2021 at 12:22 pm #20018
Dagmar Munn
KeymasterHi Cheryl, It’s great to read that you are interested in virtual meetings. This is something Amanda and I tried during May (ALS Awareness Month). But, it was a one-time event 🙁 Hopefully, we’ll be holding another one again in the future – – and we’ll definitely let you know when, so you can join us 🙂
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July 24, 2021 at 3:42 pm #20027
David Crellin
ParticipantA little request from the UK and other European countries: if you’re OK with day-time meetings then the time difference (ET+5 for me) means I don’t have to stay up too late.
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July 28, 2021 at 4:53 pm #20053
Ann Thomson
ParticipantI would love it if you had a virtual meeting. I’m a cALS to my husband Jim who is completely nonverbal and can’t move.
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July 28, 2021 at 4:57 pm #20055
Dagmar Munn
KeymasterWow – – it’s great that we’re gaining interest in setting up a virtual (online/Zoom) meeting of our members!
How about some more input and suggestions as to what time of day/night is best for you? What’s your time zone and hours of availability?
Thanks!
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July 29, 2021 at 11:56 am #20057
Anonymous
InactiveTime is tricky. A few of the Zoom meetings I have been in have people from India, which is way ahead of the USA timewise. It is the middle of the night there at 8pm EST here.
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July 30, 2021 at 12:45 pm #20107
Kathleen B (Katie)
ParticipantI’m a recent Forums join–interested in the Virtual meeting idea too–best time for me is in the 10am-3pm time range– Eastern (Daylight savings) Time Zone of the United States.
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July 30, 2021 at 9:01 pm #20117
Amanda
KeymasterCould the forum members interested let us know what time zone you are in, please. That may help Dagmar and I narrow down some options. We know it may be difficult to work around everyone’s schedule, but we will do our best to include as many members as we can.
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August 3, 2021 at 2:22 pm #20138
James Bonner
ParticipantCDT
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August 3, 2021 at 3:30 pm #20145
Bill
ParticipantI’m EST here and would try to join. I’m terrible at remembering the monthly zoom meeting the ALS has here in SwFL.
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August 3, 2021 at 4:19 pm #20140
Susan guarcello
ParticipantI would be interested in a zoom meeting. I’m pretty flexible with time I’m In eastern time zone.
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August 3, 2021 at 4:30 pm #20147
Susan guarcello
ParticipantBill, I live in SWFL. I will be joining the North Port meeting at the end of the month. Is that the one ou are referring to?
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August 5, 2021 at 2:39 pm #20172
Susan guarcello
ParticipantAmanda, i am so happy to hear i have a friend nearby. I hope i can call you friend. Thank you
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August 5, 2021 at 4:45 pm #20173
James A Gans
ParticipantI am interested in attending a virtual or zoom meeting. At 69 my ALS started lightly one year ago and now my arms especially the right arm is very weak along with strong fatigue. I miss my violin very much. Please let me know if and when the virtual meeting will be. Thank you!
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