Spinal Cavernous Angioma Online Support Group

Discussions of issues related to living with cavernous angiomas

Spinal Cavernous Angioma Online Support Group

Postby Connie Lee » Mon May 13, 2019 3:05 am

Next Sunday, May 19th at 3 pm PT, 6 pm ET, we will be holding our quarterly online support group meeting for those with cavernous angioma in the spinal cord. The meeting is held using Zoom video-conferencing. You can choose to join with video so you can see everyone or you may join with just audio.

You must pre-register at https://zoom.us/meeting/register/6980767bf411ba2acde7dc3c8da9331e

Once you've registered, you will receive an email with a link to join the meeting.
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Connie Lee
Founder, Angioma Alliance
 
Posts: 461
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Location: Norfolk, Virginia

Re: Spinal Cavernous Angioma Online Support Group

Postby joanncooper » Tue May 14, 2019 5:12 pm

Hi Connie,
This is awesome! Would it be possible to start something similar for brainstem CM’s? I’ve been looking for a local stroke support group, but no luck. It would be so wonderful to talk with other’s that understand. My family has passed away and my husband is supportive, but really doesn’t understand what I’m going through. It’s hard for people to understand this disease especially if they cannot see anything…meaning the silent disabilities/deficits vs. the physical ones that people can see.
Thank you!

p.s. I'm not a Facebook user.
joanncooper
 
Posts: 37
Joined: Tue Jan 13, 2015 5:39 pm


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