New England get together?

Announcements of local get-togethers and events

New England get together?

Postby KKMOMMA1 » Mon Feb 09, 2015 4:43 pm

Has there every been one? Are many people in this northeast area affected by CM's? Anyone with kids with CM's?
KKMOMMA1
 
Posts: 8
Joined: Thu Oct 30, 2014 8:10 pm

Re: New England get together?

Postby Connie Lee » Tue Feb 10, 2015 2:07 am

KKMOMMA- are you on Facebook? We have a pretty active parent's group there: Angioma Alliance Parents and Children. It's a closed group so you need to ask to join.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
User avatar
Connie Lee
Founder, Angioma Alliance
 
Posts: 431
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia

Re: New England get together?

Postby kdaniele203 » Sat Jun 13, 2015 7:43 pm

I'm in the north east, I have a 7wAr old son as well, awaiting genetic testing to see if he is affected as well.
kdaniele203
 
Posts: 3
Joined: Thu Jun 11, 2015 9:45 pm

Re: New England get together?

Postby kdaniele203 » Sat Jun 13, 2015 8:16 pm

I'm in the north east, I have 2 cavernomas one on the brain stem with a recent bleed and another in the frontal lobe, I also have a 7year old son as well, awaiting genetic testing to see if he is affected too.
kdaniele203
 
Posts: 3
Joined: Thu Jun 11, 2015 9:45 pm


Return to Local Get-Togethers

Who is online

Users browsing this forum: No registered users and 1 guest

cron