@AlliancetoCure
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Donate Today!
Donate Today!
This Giving Season, you can drive a cure We depend on supporters like you to enable our progress towards a CCM cure. Our $200,000 Giving Season goal is bold, but together, we can drive a cure for CCM . Please give what you can for a CCM cure today. No gift is too large, and no gift ...
Alliance to Cure Website
Alliance to Cure Website
CCM Research Overview with Dr. Ed Smith
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 a brief overview of basic, translational, and clinical research in CCM, explain how studies are conducted and translated into care guidelines, and highlight key research efforts shaping the field. Learn how patients and families can engage in research and help set priorities for the future.
ANGIOMA ALLIANCE - 2026 Fore! A Cure Golf Tournament
ANGIOMA ALLIANCE - 2026 Fore! A Cure Golf Tournament
Tee Off for a Cure: Join Us for Our 1st Annual Fore! A Cure Golf Scramble!
ANGIOMA ALLIANCE - 2026 Chip-in for a Cure
ANGIOMA ALLIANCE - 2026 Chip-in for a Cure
Tee Off for a Cure: Join Us for Our 2nd Annual Chip-In for a Cure Golf Scramble! The Chip-in for a Cure Charity Golf Scramble unites community members to raise critical funds for Alliance to Cure Cavernous Malformation. By participating, you’ll help advance research, expand patient support programs, and bring hope to individua...
ALLIANCE TO CURE - 2026 CCM Family Weekend
ALLIANCE TO CURE - 2026 CCM Family Weekend
You’re invited
Understanding the Research: How Organoids Help Scientists Understand CCM Proteins - Alliance to Cure Cavernous Malformation
Understanding the Research: How Organoids Help Scientists Understand CCM Proteins - Alliance to Cure Cavernous Malformation
Researchers are continuing to explore how cerebral cavernous malformations (CCM) develop and behave at a cellular level. In a recent study, scientists used organoids, which are miniature 3D tissues grown...
Join the community virtual roundtable
Join the community virtual roundtable
Joy matters, especially when life is complicated. This February, instead of our usual education-focused webinar, we’re creating space for joy, curiosity, and connection. Show and Tell: A CCM Community Virtual Roundtable will be a relaxed, community-centered event, and everyone is encouraged to attend. Members who are interested can sign up for a five-minute slot to share something they love or something that brings them joy. What are you into right now? What lights you up? It might be cosplay, art, soccer, music, pets, quilting, knitting, photography, or something entirely different. You don't have to present to attend, everyone is encouraged to come and hang out, listen, and enjoy learning more about the people who make up our community. No slides (unless you want them), and no expertise required. This will be casual, supportive, and fun.
Her life remains ‘a work in progress’ after a stroke at 30 – and she wants to inspire others | American Heart Association
Her life remains ‘a work in progress’ after a stroke at 30 – and she wants to inspire others | American Heart Association
Stroke survivor Jennifer Rose Goldman of Old Westbury, New York, lost her balance, peripheral vision and some independence but not her determination and hope.
Understanding the Research: Long-Term Outcomes of Untreated Cerebral Cavernous Malformations - Alliance to Cure Cavernous Malformation
Understanding the Research: Long-Term Outcomes of Untreated Cerebral Cavernous Malformations - Alliance to Cure Cavernous Malformation
Research articles can sometimes feel overwhelming with medical terms and statistics. We’ve created this summary to highlight the key findings in clear, everyday language so you can better understand what...
CCM Care: Neurology, Seizures and Hormonal Considerations Webinar
CCM Care: Neurology, Seizures and Hormonal Considerations Webinar
Check out this fantastic webinar presented by some of the team at the Rochester Mayo Clinic Center of Excellence. Dr. Kelly Flemming and Dr. Kelsey Smith sha...
Breaking Down the Risks: Seizures and Brain Bleeds in Familial Cavernous Malformation - Alliance to Cure Cavernous Malformation
Breaking Down the Risks: Seizures and Brain Bleeds in Familial Cavernous Malformation - Alliance to Cure Cavernous Malformation
Research articles can sometimes feel overwhelming with medical terms and statistics. We’ve created this summary to highlight the key findings in clear, everyday language so you can better understand what...
Volunteer Interest Form
Volunteer Interest Form
Care Partners’ Hour - Supporting the Supporters.
Care Partners’ Hour - Supporting the Supporters.
Welcome! You are invited to join a meeting: Care Partners’ Hour - Supporting the Supporters. After registering, you will receive a confirmation email about joining the meeting.
HuffPost Article - A Dad Tried To Bully Me Into Giving My Seat To His Kid. Here's What Happened When I Said No.
HuffPost Article - A Dad Tried To Bully Me Into Giving My Seat To His Kid. Here's What Happened When I Said No.
“Oh yeah? That’s your seat?” He reeked of beer and a jagged vein bulged from his left temple. “Why are you so special?”
New Mexico Patient, Family, & Provider Conference
New Mexico Patient, Family, & Provider Conference
CCM Care Guidelines - 2025 Update
CCM Care Guidelines - 2025 Update
Patient Stories - John Andres
Patient Stories - John Andres
John Andres In June 2020, I woke up and could not walk straight. I bumped into the wall, had numbness in my face, my senses of taste and smell were...
CCM Connect
CCM Connect
CCM Connect guides cavernous malformation patients and caregivers to expert medical care, resources, and research opportunities.
Patient Navigation
Patient Navigation
Our Patient Navigator is here to talk to you about cavernous malformation care, insurance, services, and financial and disability resources.
YouTube Channel - Alliance to Cure Cavernous Malformation
YouTube Channel - Alliance to Cure Cavernous Malformation
Sign Up for Updates!
Sign Up for Updates!
Current Research
Current Research
Patient-Expert Certificate Program
Patient-Expert Certificate Program
Webinar by Connie Lee-Gentics and You
Webinar by Connie Lee-Gentics and You
For Patients
ThursdayZoom Support Group
ThursdayZoom Support Group
Cavernous Malformations And Children
Cavernous Malformations And Children
Imaging
Imaging
Types of Rehabilitation
Types of Rehabilitation
Online Community
Online Community
Member Blogs/Books/Stories
Member Blogs/Books/Stories
Amy's Story: I thought it was just a headache...
Amy's Story: I thought it was just a headache...
Cat K.'s Patient Story
Cat K.'s Patient Story
Jeffrey was battling his rare genetic brain condition on his own. Then he discovered an overseas 'family'
Jeffrey was battling his rare genetic brain condition on his own. Then he discovered an overseas 'family'
Brian's Cavernous Malformation Story
Brian's Cavernous Malformation Story
Preparing for Surgery
Preparing for Surgery
Dr Brown's Cavernous Malformation Story
Dr Brown's Cavernous Malformation Story
Olmsted Falls teacher’s medical emergency brings out the best in her students
Olmsted Falls teacher’s medical emergency brings out the best in her students
Esperanza's Cavernous Malformation Story
Esperanza's Cavernous Malformation Story
Share your CCM story
Share your CCM story
Shop
Alliance to Cure Swag
Alliance to Cure Swag
Biscochito - A Children's Book about the familial form of Cavernous Malformation
Biscochito - A Children's Book about the familial form of Cavernous Malformation
News
The CCM Program Project Grant: An NIH-funded research success story
The CCM Program Project Grant: An NIH-funded research success story
Endothelial TLR4 and the microbiome drive cerebral cavernous malformations - Nature
Endothelial TLR4 and the microbiome drive cerebral cavernous malformations - Nature
$3.1 Million Grant Backs Promising Focused Ultrasound Research
$3.1 Million Grant Backs Promising Focused Ultrasound Research
Mother and son with brain tumors raise awareness by selling mistletoe
Mother and son with brain tumors raise awareness by selling mistletoe
A Cure is Within Our Reach - Connie Lee's Year End Address
A Cure is Within Our Reach - Connie Lee's Year End Address
Focused Ultrasound Foundation
Focused Ultrasound Foundation
Alliance to Cure Cavernous Malformation Receives $25,000 Grant from Kohl’s National Giveback Initiative
Alliance to Cure Cavernous Malformation Receives $25,000 Grant from Kohl’s National Giveback Initiative
Lurie Children's Hospital recognized as CCM Clinical Center
Lurie Children's Hospital recognized as CCM Clinical Center
Alliance to Cure Breaking Barriers program wins Justworks grant award
Alliance to Cure Breaking Barriers program wins Justworks grant award
Practical solutions for caregiver stress
Practical solutions for caregiver stress
Video: ‘Beyond the White Lines: The Ryan Westmoreland Story’
Video: ‘Beyond the White Lines: The Ryan Westmoreland Story’
Emily's story - left temporal lobe cavernoma
Emily's story - left temporal lobe cavernoma
After a Rare Diagnosis and Brain Surgery as a Kindergartener, Kai Makes a Remarkable Recovery - Florida Hospital News and Healthcare Report
After a Rare Diagnosis and Brain Surgery as a Kindergartener, Kai Makes a Remarkable Recovery - Florida Hospital News and Healthcare Report
The Baca Family Historical Project
The Baca Family Historical Project
Cavernous Malformation and School
Cavernous Malformation and School
MRI Guided Ultrasound with Delaney Fisher
MRI Guided Ultrasound with Delaney Fisher
Patient Stories
Patient Stories
Interested in Hosting an Event?
Interested in Hosting an Event?
Sign Up for Updates!
Sign Up for Updates!
Gut Health and the Microbiome
Gut Health and the Microbiome
Recursion’s Phase 2 Trial for the Treatment of Cerebral Cavernous Malformation has Fully Enrolled | Recursion Pharmaceuticals, Inc.
Recursion’s Phase 2 Trial for the Treatment of Cerebral Cavernous Malformation has Fully Enrolled | Recursion Pharmaceuticals, Inc.
Quarterly Newsletter
Quarterly Newsletter
Positively JAX: Dance instructor shares rare health condition battle through dance routine
Positively JAX: Dance instructor shares rare health condition battle through dance routine
Recursionauts Series: Connie Lee
Recursionauts Series: Connie Lee
NORD Abbey S. Meyers Leadership Award Presentation
NORD Abbey S. Meyers Leadership Award Presentation
Alliance to Cure Cavernous Malformation Recognizes Thomas Jefferson University Hospitals as a CCM Clinical Center
Alliance to Cure Cavernous Malformation Recognizes Thomas Jefferson University Hospitals as a CCM Clinical Center
Patient Registry
Patient Registry
Alliance to Cure Cavernous Malformation Recognizes Beth Israel Deaconess Medical Center as a CCM Clinical Center
Alliance to Cure Cavernous Malformation Recognizes Beth Israel Deaconess Medical Center as a CCM Clinical Center
Participate in Clinical Trials
Participate in Clinical Trials
CCM Clinical Care Guidelines
CCM Clinical Care Guidelines
With a little 'tickle,' a new technology gives hope to stroke patients with paralysis | CNN
With a little 'tickle,' a new technology gives hope to stroke patients with paralysis | CNN
Centers of Excellence
Centers of Excellence
Clinical Trial FAQ
Clinical Trial FAQ
CCM Healthy Cookbook, 3rd Edition
CCM Healthy Cookbook, 3rd Edition
"I found the love of my life, years later we made a shocking discovery"
"I found the love of my life, years later we made a shocking discovery"
Ryan Westmoreland, whose baseball dream was struck down by brain tumors, inspires as a student at Northeastern
Ryan Westmoreland, whose baseball dream was struck down by brain tumors, inspires as a student at Northeastern
Webinar-Headaches and Pain Management
Webinar-Headaches and Pain Management
Eloquent
Eloquent
Surgery for Intracranial Cranial Cavernous Malformation with Dr. Lanzino
Surgery for Intracranial Cranial Cavernous Malformation with Dr. Lanzino
Rare × 2 = ? What having twins with a rare condition teaches you about people
Rare × 2 = ? What having twins with a rare condition teaches you about people
Webinar-Dr. Awad: Cavernous Malformations and the Aging Brain
Webinar-Dr. Awad: Cavernous Malformations and the Aging Brain
Duke University Hospital Named Center of Excellence
Duke University Hospital Named Center of Excellence
Alliance to Cure Cavernous Malformation (Cavernous Angioma, Cavernoma) | Facebook
Alliance to Cure Cavernous Malformation (Cavernous Angioma, Cavernoma) | Facebook
Common Mutations
Common Mutations
20 Questions Answered
20 Questions Answered
Fatigue
Fatigue
Feelings Parade: Vulnerable Songs from the Deep Hearts Core
Feelings Parade: Vulnerable Songs from the Deep Hearts Core
Imaging
Imaging
Cavernous Malformation and School
Cavernous Malformation and School
Webinars and Conference Presentation Videos
Webinars and Conference Presentation Videos
Patient Stories
Patient Stories
Eloquent (trailer): A Documentary by the Alliance to Cure
Eloquent (trailer): A Documentary by the Alliance to Cure
Telling a Story of Healing Through a Child's Eyes
Telling a Story of Healing Through a Child's Eyes
Alliance to Cure Cavernous Malformation Recognizes Stanford Health Care as a Center of Excellence
Alliance to Cure Cavernous Malformation Recognizes Stanford Health Care as a Center of Excellence
UCLA Named CCM Clinical Center by the Alliance to Cure Cavernous Malformation
UCLA Named CCM Clinical Center by the Alliance to Cure Cavernous Malformation
Patient-Expert Certificate Program
Patient-Expert Certificate Program
Webinar: Let's Talk About Emulsifiers
Webinar: Let's Talk About Emulsifiers
Dr. Lawton: Surgical Advances
Dr. Lawton: Surgical Advances
Common Mutations
Common Mutations
Spinal Cord Lesions
Spinal Cord Lesions
Research Around the World
Research Around the World
Recursion Announces Enrollment of First Patient in Phase 2 Trial for the Treatment of Cerebral Cavernous Malformation
Recursion Announces Enrollment of First Patient in Phase 2 Trial for the Treatment of Cerebral Cavernous Malformation
The Spark for Decoding Biology: An Origin Story
The Spark for Decoding Biology: An Origin Story
Genetics of Cavernous Malformation
Genetics of Cavernous Malformation
Mishawaka 10-year-old shares his story of life with epilepsy after surgery to stop seizures
Mishawaka 10-year-old shares his story of life with epilepsy after surgery to stop seizures
Dr. Awad Presents a Trial Update and Q&A Session
Dr. Awad Presents a Trial Update and Q&A Session
Parents of Children With Rare Diseases Aren't Superheroes
Parents of Children With Rare Diseases Aren't Superheroes
Seizures
Seizures
Unique contribution of one patient advocacy organization in advancing cerebral cavernous malformation awareness and research
Unique contribution of one patient advocacy organization in advancing cerebral cavernous malformation awareness and research
16 years Living with a Rare Disease – Cavernoma – Rare Disease Day 2022
16 years Living with a Rare Disease – Cavernoma – Rare Disease Day 2022
Breaking Barriers
Breaking Barriers
Questions to Ask Your Doctor
Questions to Ask Your Doctor
Four years after brain surgery, 9-year-old Crestview girl is thriving | crestviewbulletin.com
Four years after brain surgery, 9-year-old Crestview girl is thriving | crestviewbulletin.com
How a Rare Brain Mutation Spread Across America
How a Rare Brain Mutation Spread Across America
BLACK HEALTH LIT: Breaking Barriers to Rare Disease Diagnosis on Apple Podcasts
BLACK HEALTH LIT: Breaking Barriers to Rare Disease Diagnosis on Apple Podcasts
Join or Mailing List!
Join or Mailing List!
Who is Alliance to Cure Cavernous Malformation?
Who is Alliance to Cure Cavernous Malformation?
Treatments in Development
Treatments in Development
Dr. Mark Kahn, Univ. of Pennsylvania, "Recent Microbiome Research Progress" National Conference 2019
Dr. Mark Kahn, Univ. of Pennsylvania, "Recent Microbiome Research Progress" National Conference 2019
Angioma Alliance Receives $600,000 Award from the Chan Zuckerberg Initiative to Advance Rare Disease Research
Angioma Alliance Receives $600,000 Award from the Chan Zuckerberg Initiative to Advance Rare Disease Research
Volunteers Urgently Needed for CCM Health-Index Survey
Volunteers Urgently Needed for CCM Health-Index Survey
Volunteer
Volunteer
Genetics of Lesion Development
Genetics of Lesion Development
The Brainstem: Why is it so sensitive?
The Brainstem: Why is it so sensitive?
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