Minnesota

Community Alliance

We are close to forming a Minnesota Community Alliance, and we would love to know if you are interested in joining!  Contact Lindsay Ramirez at lindsay@alliancetocure.org to let her know.

Visit our Angioma Community Alliance page to learn more about how you can meet others in your area, provide mutual support, organize events, and raise awareness. We need 4-5 people to get a Community Alliance off the ground. Likely, we already know a few interested members near you!

Please contact Lindsay Ramirez at lindsay@alliancetocure.org to let her know you are interested in participating or if you are interested in holding an event in your community.

In the meantime, please request to join our Great Lakes/Central Plains Facebook group for peer support and more information about local resources.

Center of Excellence (COE):

Alliance to Cure Cavernous Malformation has recognized Mayo Clinic Hospital – St. Mary’s Campus, Rochester as a Center of Excellence.

Phone:  (507) 538-1036

Medical Director and Neurologist: Dr. Kelly Fleming 

For more information about our other Centers of Excellence, please visit our information page.

upcoming events online and around the country

Sep 29 @ 7:00 pm – 8:00 pm
7:00 pm
Join us on September 29th at 7:00 pm ET/4:00 pm PT as Glenn Morrison, MSc, Ph.D. shares updates on the Rec-994 Sycamore Trial. Dr. Morrison is the VP for Clinical Development, Neuroscience, and Rare Disease...
Sep 29 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Oct 2 @ 8:00 am – 11:00 am
8:00 am
Register here for our 8th Annual Zuma Beach walk in Malibu, CA. Registration is free!  Raise or donate $30 and receive a t-shirt.  
Zuma Beach
Oct 3 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Oct 4 @ 8:00 pm – 9:00 pm
8:00 pm
Join us to connect with other young people affected by cavernous malformation.  We usually play some games and have some time to chat. We will meet at 8pm Eastern. Register in advance for this meeting:...
Oct 6 @ 8:00 pm – 9:00 pm
8:00 pm
Join us the first Thursday of every month for an information meeting for new patients. CCM 101 is a space for newly diagnosed members and their families to ask questions, get support and connect with...
Zoom
Oct 6 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Oct 10 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Oct 13 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Oct 17 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Oct 20 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Oct 20 @ 8:00 pm – 9:00 pm
8:00 pm
Join us on the 3rd Thursday of the month at 8pm Eastern, 5pm Pacific for a special group for parents of children affected by CCMs. You will join our weekly support group meeting and then...
Oct 24 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Oct 27 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Oct 31 @ 12:00 pm – 1:00 pm
12:00 pm
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Nov 1 @ 9:00 pm – 10:00 pm
9:00 pm
Join us to connect with other young people affected by cavernous malformation.  We usually play some games and have some time to chat. We will meet at 8pm Eastern. Register in advance for this meeting:...
Nov 3 @ 9:00 pm – 10:00 pm
9:00 pm
Join us the first Thursday of every month for an information meeting for new patients. CCM 101 is a space for newly diagnosed members and their families to ask questions, get support and connect with...
Zoom
Nov 3 @ 9:00 pm – 10:00 pm
9:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Nov 7 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Nov 10 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Nov 14 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Nov 17 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Nov 17 @ 8:00 pm – 9:00 pm
8:00 pm
Join us on the 3rd Thursday of the month at 8pm Eastern, 5pm Pacific for a special group for parents of children affected by CCMs. You will join our weekly support group meeting and then...
Nov 18 @ 9:00 am – Nov 19 @ 3:00 pm
9:00 am
Please join us on Friday and Saturday, November 18-19, at the Washington Duke Hotel and Golf Club in Durham, North Carolina for our 2022 national patient conference. This conference is held concurrently with the International...
Washington Duke Inn
Nov 21 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Nov 24 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Nov 28 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.
Dec 1 @ 8:00 pm – 9:00 pm
8:00 pm
Join us the first Thursday of every month for an information meeting for new patients. CCM 101 is a space for newly diagnosed members and their families to ask questions, get support and connect with...
Zoom
Dec 1 @ 8:00 pm – 9:00 pm
8:00 pm
Please join us every Thursday evening for our Zoom Support Group. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIsf-6sqDsuG9Yf37rQHUGtYKmxwNbJpxYQ After registering, you will receive a confirmation email containing information about joining the meeting.
Dec 5 @ 11:00 am – 12:00 pm
11:00 am
Join us for a casual coffee chat and support!  Reach out to Darla at darla@alliancetocure.org or Lindsay at lindsay@alliancetocure.org for the link to join.