Alliance to Cure Cavernous Malformation

NorCal Community Monthly Zoom
2026-06-13 10:00 - 11:00, 2026-07-11 10:00 - 11:00 (America/New_York)
The purpose of our Monthly Community Zoom is to provide an opportunity for people to get to know each other, potentially leading to informal meet-ups such as having coffee together or taking a walk. The ultimate goal is to cultivate a sense of community, with the hope that these initial connections will evolve into larger community events over time. Turn this virtual meeting into a real-life moment. This might be the beginning of some fantastic community events! Register here at this link: https://us06web.zoom.us/meeting/register/tZUtdOmupzkjHdNCtoN8WinwOrImq5p4MhN_ If you have any questions, please email me at linda@alliancetocure.org

Virtual CCM Coffee & Support
2026-06-15 12:00 - 13:00, 2026-06-22 12:00 - 13:00, 2026-06-29 12:00 - 13:00, 2026-07-06 12:00 - 13:00, 2026-07-13 12:00 - 13:00, 2026-07-20 12:00 - 13:00 | https://us02web.zoom.us/meeting/register/tZ0pc-GqrzMvE93LyYtCrYnvvnoMFE-PjDgN
Grab a coffee and join us for a casual support group meeting on Mondays at 12:00 PM Eastern, 9:00 PM Pacific.
Register for the meeting here: https://us02web.zoom.us/meeting/register/tZ0pc-GqrzMvE93LyYtCrYnvvnoMFE-PjDgN
Reach out to Darla at darla@alliancetocure.org for more information.

Care Partners' Weekly Supporting the Supporters Meeting
2026-06-15 20:00 - 21:00, 2026-06-22 20:00 - 21:00, 2026-06-29 20:00 - 21:00, 2026-07-06 20:00 - 21:00, 2026-07-13 20:00 - 21:00
Join other caregivers in this meeting designed to support the supporters. The meeting will happen on Mondays at 8:00 eastern. Register for the meeting here.

Monthly Spinal Zoom Group
2026-06-16 16:30 - 17:30
You’re Invited to Our Monthly Spinal Zoom Support Group
We warmly welcome you to join our Spinal Zoom group, a gathering created for individuals living with a spinal cord cavernous malformation, whether currently navigating symptoms or adjusting after a lesion removal.
Our group meets every third Tuesday of the month at 4:30 PM EST, 3:00 CST, 1:30 PST on Zoom. This is a safe, supportive space where patients share their experiences—the ups, the downs, and everything in between. If you share these challenges, we’d be glad to have you with us.
Please join us and connect with others who truly understand.
https://us06web.zoom.us/j/88055060667?pwd=[REDACTED]

New England Community Monthly Zoom
2026-06-16 19:00 - 20:00
The purpose of our Monthly Community Zoom is to provide an opportunity for people to get to know each other, potentially leading to informal meet-ups such as having coffee together or taking a walk. The ultimate goal is to cultivate a sense of community, with the hope that these initial connections will evolve into larger community events over time. Turn this virtual meeting into a real-life moment. This might be the beginning of some fantastic community events! We meet on the third Tuesday every month at 7:00 pm EST. Join us at this link: https://us06web.zoom.us/j/86328441747?pwd=[REDACTED] If you have any questions, please email me at linda@alliancetocure.org

Welcome Wednesday
2026-06-17 20:30 - 21:30 | https://www.alliancetocure.org/event/welcome-wednesday/2026-06-17/
Welcome Wednesday is a new virtual meeting designed especially for new patients who want to learn more about the support and resources the Alliance to Cure Cavernous Malformation provides. During this session, we’ll explore the tools available on our website, review educational materials, highlight the support groups we offer, and introduce programs that can be helpful throughout the CCM journey. It’s a great opportunity to get oriented, ask questions, and connect with the community.
Register here: https://us06web.zoom.us/j/82094830433?pwd=[REDACTED]

Webinar: AI Tools & Rare Disease: What Every Patient Should Know
2026-06-18 19:00 - 20:00
Join Kim Snyder, PMP, CIPP/US, and Chelsea Wagner for a practical conversation about how artificial intelligence is showing up everywhere, from search engines to symptom checkers to your doctor’s office, and why using it wisely matters when you’re living with a rare disease. This webinar breaks down what AI can and cannot do for patients and caregivers, offering honest, jargon‑free guidance on where it truly helps and where it may lead you astray.
June 18th, 2026, 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT
Click here to register

CCM Support Group
2026-06-18 20:00 - 21:00, 2026-06-25 20:00 - 21:00, 2026-07-02 20:00 - 21:00, 2026-07-09 20:00 - 21:00, 2026-07-16 20:00 - 21:00 | https://us02web.zoom.us/meeting/register/AQi9k5oXSz2FU_mx4-utdw
Please join us every Thursday evening at 8:00 PM Eastern, 5:00 PM Pacific for our Zoom Support Group.

Register in advance for this meeting: https://us02web.zoom.us/meeting/register/AQi9k5oXSz2FU_mx4-utdw
After registering, you will receive a confirmation email with details on joining the meeting.

Brainstem Group
2026-06-25 19:00 - 20:00
Brainstem Group Connect with others navigating life with a brainstem cavernous malformation in a supportive, understanding space. We meet on the fourth Thursday of each month at 7:00 PM Eastern, 4:00 PM Pacific to share experiences, ask questions, and build community. Whether you’re newly diagnosed or have been living with CCM for years, you’re welcome here.

Register in advance for the group here: https://us02web.zoom.us/…/register/l2jb4aqhSaaZSZAxIq5sLg.

Millennial Support Group
2026-06-25 20:00 - 21:00
Join us for a monthly virtual support group for CCM patients ages 28 to 44! If you are a little bit outside of this age bracket, that’s okay too!
This meeting will take place on the fourth Thursday of each month at 8:00-9:00 PM EST. This meeting will take place during our regular support group in a breakout room.

https://us02web.zoom.us/meeting/register/tZMsf–tqT0vGdGT_ELuDWrCdontUVsXDPt0

CCM 101
2026-07-02 19:00 - 20:00
CCM 101 is an informational meeting for new members offered on the first Thursday of the month, at 7:00 PM Eastern. We’ll review slides covering the basics of the illness and then have a chance to chat and connect with others affected by this disease. Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZEqce2ppjkiGdR5YLktrvueAnC7KXKtNhce

New Mexico Community Monthly Zoom
2026-07-04 07:00 - 09:00
The purpose of our Monthly Community Zoom is to provide an opportunity for people to get to know each other, potentially leading to informal meet-ups such as having coffee together or taking a walk. The ultimate goal is to cultivate a sense of community, with the hope that these initial connections will evolve into larger community events over time. Turn this virtual meeting into a real-life moment. This might be the beginning of some fantastic community events! We meet on the first Saturday of the month at 9 am MST. Join here: https://us06web.zoom.us/j/88044684492?pwd=[REDACTED] Reach out to me with any questions: linda@alliancetocure.org

Monthly Men's Support Group
2026-07-09 19:00 - 20:00
Join us for our Men’s support group on the 2nd Thursday of the month. Register here: https://us02web.zoom.us/meeting/register/tZUqde-orT4vHdc713vd0Ktu84Reb5zuvlmA

Monthly Women's Support Group
2026-07-09 19:00 - 20:00
Join us for our monthly women’s support group on the 2nd Thursday of the month. Register here: https://us02web.zoom.us/meeting/register/tZUqde-orT4vHdc713vd0Ktu84Reb5zuvlmA
Topics will revolve around CCM and women’s issues. This meeting will be a breakout session alongside our men’s group.

Welcome Wednesday
2026-07-15 20:30 - 21:30 | https://www.alliancetocure.org/event/welcome-wednesday/2026-07-15/

Family Weekend 2026
2026-07-17 15:00 - 2026-07-20 12:00
Join us for the Alliance to Cure Cavernous Malformation’s Family Weekend 2026 at Ironwood Springs Ranch, a peaceful, welcoming event designed for fun, connection, rest, and time together as a community.
Family Weekend is a chance for individuals and families affected by CCM to spend time together in a supportive, low-pressure environment. The weekend blends relaxed social time, optional group activities, and opportunities to connect with others who truly understand the CCM experience. You can be as busy, or as quiet, as you’d like.
About the Ranch
Ironwood Springs Ranch is a fully accessible retreat center set on beautiful natural grounds. Lodging and common spaces are designed to accommodate a wide range of mobility and accessibility needs.
What to Expect

Comfortable lodging and all meals included
A variety of optional activities such as outdoor recreation, crafts, accessible ziplining, games, and group gatherings
Plenty of downtime for rest, conversation, and connection
A family-friendly atmosphere with activities for both adults and kids

Most activities are included in the cost. A small additional fee may apply for select specialty activities, which will always be optional.
Cost

$250 per adult
$125 per child

This price includes lodging, meals, and most activities for the full weekend.
We’re committed to making Family Weekend as accessible as possible, and limited financial assistance will be available for families who need it.
Whether this is your first Alliance event or you’re a returning family, we hope you’ll join us for a meaningful, restorative weekend together.
https://www.alliancetocure.org/family-weekend-july-17-20-2026/
