A support group for “Chiaris, EDS, and others…” has started up in the Charlotte, NC area. The group plans to meet the 3rd Saturday of every month at Julia’s Cafe on 1133 N. Wendover in Charlotte from 1:00-4:00pm. Crystal Grampus is the moderator. The first meet was in October, 2019. So far, about a dozen folks have shown up in the last couple meets - but only folks with EDS have come. No one with Chiari’s has shown up, yet - except me! If there are other CHIARIANS who need/want support, you are welcome to show up every 3rd Saturday at Julia’s Cafe, 1133 N Wendover
That’s wonderful! Thanks for sharing this. It can really be wonderful to meet in person sometimes.
Sharon from Mod Support
Is this still an active monthly event? Charlotte is a few hours away but I have family in the area and would love to meet some people in person! My daughter has Chiari and is being tested for EDS as well.
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YES! Actually, the next scheduled meeting is for March 14th at 1:00pm
at a place called Pizza Spiga - 3509 Matthews-Mint Hill Road. It is in Matthews,
a town southeast of Charlotte. At least, this is the latest notice I received - which
I received back in Dec. 2019. So, I am assuming it is still good.
I should probably give you the facilitator’s contact info. Crystal Grampus is
the gal who arranges the meetings, and lately, the locations are changing each time.
We used to meet in the same place every time, but I suppose to make commutes
easier for some folks in different locations, the meeting spots vary. I have Crystal’s
email and contact info at work. So, when I get that, I will forward it to you. It would
be SO NICE to have some more Chiari folk show up! (the Jan-Feb meetings were
only for the EDS folks. I don’t qualify - but my Chiaris has - and still does - give me a
great deal of CHALLENGES!!! And, I would love some fellow support!)
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My sister lives in Matthews so hopefully my daughter and I can make a weekend visit of it! Thank you for the information 
Hey, MyAngel… GREAT! I do have the official invite email I could forward on to you -
which includes links to their ‘official’ websites and all. I’m sure I will be there 'cuz I missed
the last 3 months from holiday interruptions. I can give you this info from the website…
the email for Crystal Grampus (who moderates the EDS Chiari group) is: carolinazebras@gmail.com
and she posted this cell number for texts or calls: (704)449-3517. SOMETIMES I have showed
up for the group only to find out it was cancelled - because Crystal had a medical episode. That’s
par-for-the-course with chronic issues, tho.
-Beth
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I completely understand and being that my sister lives there, it wouldn’t be a wasted trip anyway. We are going to use it as a great excuse for a girl’s weekend 
I’ll private message you my direct contact information as well. You’re in Waxhaw, isn’t that right? Perhaps we could get together more often (especially if unable to make the meeting for whatever reason). My nephew and Mother- in-law both live in Waxhaw too. Thank you for updating me. I’ll reach out to her directly as well. Hope it works out, I’m looking forward to meeting you.
I am going to try to make this meeting. I live near Albemarle, NC. I was diagnosed with Chiari in '02 and have had two decompressions ('02, '16) and a cranioplasty ('17), along with a VA shunt ('16) when I developed hydrocephalus from meningitis. I also have autonomic dysfunction, dystonia, etc. I have been out of work for the past four months, due to increased symptoms and considering the possibility of needing to go on disability, after 25 years as a special education teacher. I have been down lately coming to the realization I just can’t do it anymore. So, having a support group at this time would be nice. I am going to try my best to make it. Thank you.
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I’m sorry to hear that you are struggling. I certainly hope that you can make it, I will be there—Lord willing. I look forward to meeting you and learning from your experience.
Thanks- hope to meet you too.
Hey, Dog-Nature Lover… I sure hope you will be able to make it to the Chairi/EDS Support Group for Charlotte area. Do you know about the new time and place? The meet is scheduled for 4:00pm on March 14 at a place called Get Me Some Green. The address is 3519 Matthews-Mint Hill Road.
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Good morning Beth. I wanted to ask you approximately how long I can expect the meeting to be Saturday. I am getting a room for the night and my sister is going to keep Hope while I’m there. She isn’t ready to talk to others yet but I will definitely be there. I just wanted to have an idea so I can plan the evening. Thank you! Looking forward to seeing you there💜
No, definitely didn’t know of the change. Thanks SO MUCH for letting me know. I actually just got on to make sure it was still happening since so many things are getting canceled. Thanks