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By whatever name you know it - cavernous malformation, CCM, cavernoma, cavernous angioma - find information, opportunities, and hope here.

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Family Weekend 2026

Join us for the Alliance to Cure Cavernous Malformation’s Family Weekend 2026 at Ironwood Springs Ranch, July 17-20th. This will be a peaceful, welcoming event designed for fun, connection, rest, and time together as a community. Family Weekend is a chance for individuals...

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Driving a Cure

Watch the Driving a Cure Video. See how your support accelerates the breakthroughs leading us...

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Patient Navigation – Here to Help with CCM Challenges and Insurance Hurdles

Navigating life with cavernous malformation (CCM) can be especially challenging during times of change. Our...

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What is cavernous malformation?

Cavernous malformation (CCM) is a blood vessel disorder of the brain and spinal cord. CCM can lead to strokes, seizures, and other neurological damage. Surgery is the only current treatment. CCM affects more than 3 million children and adults worldwide.

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Our Story

When we were founded in 2002, there was a void of cavernous malformation (CCM) research and information. Over the last 20 years, we have seized opportunities to bring scientists, patients, doctors, and industry partners together to advance a cure for CCM. Our work has driven research breakthroughs and improved patient care. We now have promising treatments just under five years away. We will persevere until we have a permanent cure for CCM – available, accessible, and affordable for all.

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Webinar: CCM Research Overview with Dr. Ed Smith

Join Dr. Ed Smith, pediatric neurosurgeon and leader of our Center of Excellence at Boston Children’s Hospital, as he explores how the CCM community helps drive research forward. He’ll provide…

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Save-the-date graphic for the Alliance to Cure Cavernous Malformation “Chip-In for a Cure” Golf Tournament. Large headline reads “Save the Date” and “Golf Tournament.” Event details list: June 8, 2026, 8:00 AM to end, PB Dye Golf Club, 9526 Dr Perry Rd, Ijamsville, MD 21754. The Alliance to Cure Cavernous Malformation logo appears at the bottom. On the right, a circular photo shows four men standing on a green golf course holding clubs, smiling with rolling hills and fairways in the background.
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Chip-in for a Cure – Ijamsville, MD

3rd Annual Chip-in for a Cure Charity Golf Tournament Join us on the course at PB Dye Golf Club, June 8th starting at 8 am. Register here

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Show and Tell: A CCM Virtual Roundtable

We’re doing something fun and different in place of a webinar this month! We’re calling it Show and Tell: A CCM Community Round Table! It’s a chance for you to…

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Promotional graphic for the Alliance to Cure Cavernous Malformation “Fore! A Cure” Golf Tournament. The top features three photos: a group of men posing and lying playfully on a putting green near the flag, four women smiling with golf clubs on the course, and two golfers putting on a green with hills in the background. Below, a green banner displays the Alliance to Cure Cavernous Malformation logo and a QR code. Large text reads: “FORE! A CURE Golf Tournament.” Event details: May 14, 2026, 1:00 PM shotgun start, San Juan Hills Golf Club, 32120 San Juan Creek Road, San Juan Capistrano, CA. Questions: linda@alliancetocure.org
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Fore! A Cure Golf Tournament – San Juan Capistrano, CA

Join Us for Our 1st Annual Fore! a Cure Golf Scramble! 11:00 am Check-in/registration and driving range opens. 12:45 pm Putt-o-rama 1:00 pm Shotgun start 5:00 pm (approximately) turn in score cards. Join us…

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Graphic promoting the Alliance to Cure Cavernous Malformation “Swinging for a Cure” Golf Tournament. Large photo shows a smiling golfer crouching on the green wearing sunglasses, a patterned polo, and a golf glove while holding a longest drive marker. Smaller inset photo shows four men standing together on a golf course holding clubs. Text reads: “Benefitting Alliance to Cure Cavernous Malformation. Swinging for a Cure Golf Tournament. Early Bird Registration Open Now. May 28, 2026. Thursday, May 28, 2026 – 1:00 pm shotgun start. Twin Oaks Golf Course – 1425 N Twin Oaks Valley Rd, San Marcos, CA. Questions: linda@alliancetocure.org .
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Swinging for a Cure – San Marcos, CA

Tee Off for a Cure: Join Us for Our 4th Annual SoCal Swinging for a Cure Golf Scramble! 11:00 am Check-in/registration and driving range opens. 12:45 pm Putt-o-rama 1:00 pm Shotgun start 5:00…

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From Plate to Protection: Nutrition Approaches to Cavernous Malformation

Life after diagnosis is challenging enough; what you eat should be simple. Join Spaulding Rehabilitation dietitians Megan and Olivia to learn how to make healthy sustainable choices that don’t feel…

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Questions to Ask, Conversations to Start: A Guide to Primary Care for People Living with Cavernous Malfrormation

Join us on Thursday, October 30, 2025, at 7:00 pm ET for a new webinar presented by Katie Garbarini, MS, CGC, Sara Sukalich, MD and Steph Reyburn, MD.  This webinar…

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2025 CCM Patient Conference

Join us on November 6th-8th for our 2025 Patient Conference in Atlanta, GA. Thursday, November 6th is optional, but it will be a great afternoon if you’re able to attend. Thursday…

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Watch Past Webinars on our YouTube Channel

Did you know you can catch up on most of our past webinars and many patient conference presentations on our YouTube channel anytime? This is a link to our recorded…

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CCM 101

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…

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CCM Patient-Expert Course

Be recognized for what you know! Alliance to Cure Cavernous Malformation patients and families often become experts in cavernous malformation (CCM) out of necessity.  Alliance to Cure Cavernous Malformation offers…

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Update Your Cavernous Malformation Patient Registry Profile

Update your profile or join now. Why Participate in the Registry? Join the international research community We need you! Clinical research and treatment trials rely on volunteer participants to help…

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News & Updates

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Study Summary: Is Clot-Busting Stroke Treatment Safe for People with Cavernous Malformation?

This is a patient-friendly summary of a research study. The original article can be found...

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Save-the-date graphic for the Alliance to Cure Cavernous Malformation “Chip-In for a Cure” Golf Tournament. Large headline reads “Save the Date” and “Golf Tournament.” Event details list: June 8, 2026, 8:00 AM to end, PB Dye Golf Club, 9526 Dr Perry Rd, Ijamsville, MD 21754. The Alliance to Cure Cavernous Malformation logo appears at the bottom. On the right, a circular photo shows four men standing on a green golf course holding clubs, smiling with rolling hills and fairways in the background.

Chip-in for a Cure – Ijamsville, MD

3rd Annual Chip-in for a Cure Charity Golf Tournament Join us on the course at...

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Blue design with the text CCM Research Update

Understanding the Research: How Organoids Help Scientists Understand CCM Proteins

Researchers are continuing to explore how cerebral cavernous malformations (CCM) develop and behave at a...

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Promotional graphic for the Alliance to Cure Cavernous Malformation “Fore! A Cure” Golf Tournament. The top features three photos: a group of men posing and lying playfully on a putting green near the flag, four women smiling with golf clubs on the course, and two golfers putting on a green with hills in the background. Below, a green banner displays the Alliance to Cure Cavernous Malformation logo and a QR code. Large text reads: “FORE! A CURE Golf Tournament.” Event details: May 14, 2026, 1:00 PM shotgun start, San Juan Hills Golf Club, 32120 San Juan Creek Road, San Juan Capistrano, CA. Questions: linda@alliancetocure.org

Fore! A Cure Golf Tournament – San Juan Capistrano, CA

Join Us for Our 1st Annual Fore! a Cure Golf Scramble! 11:00 am Check-in/registration and driving...

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Graphic promoting the Alliance to Cure Cavernous Malformation “Swinging for a Cure” Golf Tournament. Large photo shows a smiling golfer crouching on the green wearing sunglasses, a patterned polo, and a golf glove while holding a longest drive marker. Smaller inset photo shows four men standing together on a golf course holding clubs. Text reads: “Benefitting Alliance to Cure Cavernous Malformation. Swinging for a Cure Golf Tournament. Early Bird Registration Open Now. May 28, 2026. Thursday, May 28, 2026 – 1:00 pm shotgun start. Twin Oaks Golf Course – 1425 N Twin Oaks Valley Rd, San Marcos, CA. Questions: linda@alliancetocure.org .

Swinging for a Cure – San Marcos, CA

Tee Off for a Cure: Join Us for Our 4th Annual SoCal Swinging for a...

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Message from CEO Connie Lee

Message from CEO Connie Lee Watch this 6-minute video from CEO Connie Lee on how...

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The Baca Legacy: Tracing a 400-Year Genetic Story of CCM in New Mexico

A 400-Year Legacy: How One New Mexico Family Helped Uncover a Genetic Link to CCM...

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CCM Cure Magazine (Fall 2025)

Check out the inaugural edition of our magazine, CCM Cure, to learn how the Alliance...

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Sakura’s Story: A Family’s Journey with Cavernous Malformation

A tumble on the soccer field changed everything for the Tafoya family. When scans revealed...

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Turning Science Into Story: How a Children’s Book Is Teaching New Mexico Families About CCM

Physician and artist Dr. Aditi Kantipuly believes that complex science can be made understandable —...

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