Alliance to Cure Cavernous Malformation, Cavernoma, Cavernous Angioma

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

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Statement from Recursion regarding REC-994 Trial

Recursion's message to our patients regarding the discontinuation of the REC-994 trial: We have difficult news to share today. Recursion has made the decision to discontinue the SYCAMORE trial of REC-994, a treatment for Symptomatic Cerebral Cavernous Malformation. We understand this news may...

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Strides to Cure CCM

This June—Cavernous Malformation Awareness Month—we invite you to walk, run, bike, swim, or roll 30...

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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3rd Annual Swinging for a Cure Golf Tournament

Event date – May 15 San Marcos, CA Register for Swinging for a Cure Benefiting the Alliance to Cure Cavernous Malformation Contact: [email protected]

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2nd Annual Chip-in for a Cure Golf Scramble

Event Date – June 9, 2025 Ijamsville, MD Register for Chip-in for a Cure Benefiting the Alliance to Cure Cavernous Malformation Contact: [email protected]

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UNM / Alliance to Cure CCM Patient, Family & Provider Conference

June 14, 2025, 10 a.m. – 3 p.m. MDT UNM Domenici Center 1001 Stanford Dr, NE Second Floor Albuquerque, NM 87106 Register here Questions? Email [email protected]

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4th Annual Charity Golf Scramble – June 30 – Windsor, CO

Event date: June 30, 2025

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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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Webinar – Our Roadmap to a Cure

Join Connie Lee, Psy.D., and Amy Akers, Ph.D., for an exciting update. Amy will present the brand-new CCM Cure Roadmap, our strategy for driving better CCM treatments and a cure…

Webinar graphic featuring Eileen Benthal's book cover. The book cover has a hand reaching out of water holding a rose, surrounded by grey skies

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Webinar- Breathing Underwater: A Caregiver’s Journey

Register today for this month’s webinar with Eileen Benthal, Thursday, November 14th. In honor of Caregiver Appreciation Month she will discuss the journey of being a caregiver in the rare…

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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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Webinar: Simple Science with Andrew Ressler, Ph.D

Join us Thursday, September 19th, at 7:00 PM Eastern for a webinar with Dr. Andrew Ressler, who will explain some of the basics of CCM science. Please register to attend…

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August Volunteer of the Month: David Meyer

We’re excited to spotlight our incredible Volunteer of the Month, David Meyer! David generously volunteered his time and talent as the photographer for our International Science Meeting and Patient Conference…

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June Volunteer of the Month

We are incredibly grateful to have Candelaria assist us with our special events; her dedication is truly remarkable. Whether it’s arranging taxi services, delivering coffee, or inflating countless balloons before…

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May Volunteer of the Month: The Weaver Family

Thank you to the Weaver Family, our May Volunteers of the Month! Ron and Margaret Weaver, with the help of their daughters and sons-in-law, Susanna and Mark Searles, and Olivia…

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May Webinar-Introducing Ovid & Graviton’s New ROCK2 Inhibitor for CCM

Join us Thursday, May 16th at 7 pm ET/4 pm PT Learn about a ROCK2 Inhibitor medication being developed by Ovid Therapeutics and Graviton Bioscience with the potential to…

Volunteer of the month Allison Mintz and Amber Brown

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April Volunteers of the Month: Allison and Amber

Join us in recognizing the volunteer efforts of Amber Brown and Allison Mintz, our Volunteers of the Month for April! Their dedication and enthusiasm have breathed new life into the…

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Webinar: Focused Ultrasound Updates with Delaney Fisher Ph.D.

Join us April 18th at 7 PM Eastern, 4 PM Pacific for this webinar where Delaney Fisher, Ph.D. will share an update on focussed ultrasound to treat Cavernous Malformation (CM)….

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Webinar: Cavernous Malformation Chronicles: Empowering Patients through Storytelling

Discover the power of storytelling in this webinar. Learn essential tips and techniques to confidently share your cavernous malformation journey. We will guide you in crafting narratives that resonate, while…

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June Webinar: Managing Seizures with Aria Fallah, MD, MS and Samuel S. Ahn, MD

Join Aria Fallah, MD, MS, and Samuel S. Ahn, MD, from UCLA for a webinar on epilepsy. We will discuss treatment options, types of Seizures, and seizure first-aid strategies. When:…

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February Volunteer of the Month – Angela Johnson

Angela Johnson embodies dedication and commitment as our volunteer of the month. Her unwavering initiative is evident through her instrumental role in kickstarting many Alliance To Cure events in Oregon….

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Webinar: Big Picture Updates on Guidelines, Trials, and Biomarkers with Dr. Awad

Join us for a Big Picture Update on Guidelines, Trials, and Biomarkers with Dr. Issam Awad from the University of Chicago Medical Center: Thursday, February 22nd, 2024 at 7:00 pm…

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January Volunteer of the Month – Sheri Baca

Sheri Baca, our dedicated volunteer of the month, exemplifies unwavering commitment as she takes on the role of caretaker for both her husband and 87-year-old mother-in-law, who is battling CCM1….

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Webinar: How to Host a Successful Fundraiser

Join us January 25th at 7:00 PM Eastern for a webinar with Lindsay Ramirez and Linda Fuchser talking about how the Alliance can support you in setting up a successful…

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Webinar – News and Updates with Connie Lee

Join us Thursday, December 21st at 7 pm ET/ 4 pm PT! Connie Lee and Amy Akers provide a year-end update about the current research status, what’s coming up in…

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Caregiver Support Meeting

Join us for a Caregiver Zoom Call on November 30th at 7:00 PM Eastern, 4:00 PM Pacific. We will be talking with author Sandy Tovray Greenberg about her book, Who…

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Volunteer of the Month: Judy Kogan

We are thrilled to recognize Judy Kogan as our Volunteer of the Month for her outstanding contributions to our organization. Judy has been our Malibu volunteer organizer for our annual…

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Surgical Approaches to Ruptured Brainstem Cavernomas

Join us as Dr. Vadivelu, a pediatric neurosurgeon from Cincinnati Children’s Hospital, discusses surgical treatment of brainstem cavernous malformation. Dr. Vadivelu is the director of the Pediatric Cerebrovascular Disease and…

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September Volunteer of the Month – Nicole Clayton

Please join us in thanking our September Volunteer of the Month, Nicole Clayton. Nicole is a caring community member, always eager to support other members. She helps to moderate our…

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Webinar: Tools to Talk to your Kids about Cavernous Malformation

In case you missed it, you can watch the recording here: https://youtu.be/OTM3IhICxOg Join us on September 28th at 7:00 pm Eastern, 4:00 pm Pacific time for our monthly webinar. This…

Volunteer of the Month, Rachel Paverman. Rachel is photographed with Connie Lee at the Premier of Eloquent.

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Rachel Paverman: August Volunteer of the Month

We are thrilled to recognize Rachel Paverman as the August Volunteer of the Month! Rachel is one of our go-to people when we need a hand with practically anything. From…

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July Webinar: Neuropsychological Testing Basics

Please join us on Thursday, July 20th at 7 pm ET, 4 pm PT for a webinar on neuropsychology basics. Bring your questions! We’ll talk about the basics of neuropsychology,…

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Volunteer of the Month, June 2023

We’d like to recognize Matthew and Sara Baron as our Volunteers of the Month for planning their first “Rocking for a Cure” benefit concert. The event was a huge success, raising over $13,000…

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Evan Compton, May Volunteer of the Month

We are thrilled to honor Evan Compton as our Volunteer of the Month! Evan, a dedicated patient of ours for the past two years, has gone above and beyond by…

May Webinar: Managing Symptoms and coping with Cavernous Malformation.

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May Webinar: Roundtable Discussion Managing Symptoms and Coping with CCM

Join us for our May Webinar on May 25th, at 7:00 pm ET/4:00 pm PT. We will have a panel of patients joining us to talk about how they cope,…

Christina, with her "Labor of Love" mindset (shown with Governor Michelle Lujan Grisham and daughter Andrea Campos)

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April Volunteer Spotlight

We want to take a moment to express our heartfelt gratitude to Christina Campos and her incredible commitment and dedication to the Alliance to Cure Cavernous Malformation advocacy efforts. Her…

Six people with hands reached into the center a circle in solidarity. The text says Volunteer of the Month Amber Blakesley.

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March Volunteer Spotlight

Please join us in thanking Amber Blakesley for sharing her graphic design talents with us. If you’ve ever worn an Angioma Alliance shirt with the iconic bubble logo, you have…

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March Webinar: Women’s Health Issues and CCM

Join us Mar 23, 2023 07:00 PM Eastern Time, 4:00 PM Pacific Time for a webinar with Dr. Kelly Flemming who will share an update on recent research on women’s…

Ask the Alliance Webinar, featuring Alliance to Cure Staff including CEO, Connie Lee. Thursday, February 23rd, 7pm ET/4 pm PT

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Webinar: Ask the Alliance

This webinar was recorded and can be viewed on our YouTube channel: https://youtu.be/tlG8XT_RB3A Join us Thursday, February 23rd at 7:00 pm eastern, 4:00 pm pacific for our first ever “Ask…

February Volunteers of the Month are our card-writing team, Alexa Horeff, Lauri Smalley, Jaclyn Tobin, and Amy Chick.

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February Volunteer Spotlight

Please join us in thanking our incredible card-writing team: Alexa Horeff, Lauri Smalley, Jaclyn Tobin, and Amy Chick. Our dedicated card writers share their skills and their lovely handwriting with…

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Volunteer Spotlight

Please join us in thanking David Meyer for sharing his excellent photography talents with our community at the Scientific Meeting and Patient Conference in November. David is an active member…

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Webinar: Headaches and Pain Management for CCM Patients with Dr. Girotra

Join us on January 26th, 2023 at 7pm eastern, 4pm pacific. Dr. Girotra will be joining us to talk about headaches and pain management. He is an assistant professor of…

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Volunteer of the Year: Matt Burnell

THANK YOU TO OUR 2022 VOLUNTEER OF THE YEAR, MATT BURNELL! Matt Burnell is an incredible friend to the Alliance! There has been a lot of buzz in our community…

Webinar, photo of Dr. Giuseppe Lanzino, clean shaven, short dark hair, wearing white dress shirt, black jacket and navy and white tie.

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Webinar: Surgery for Intracranial Cranial Cavernous Malformation with Dr. Lanzino

Join us on Thursday, December 15, at 7 pm Eastern, 4 pm Pacific. Giuseppe Lanzino, M.D., specializes in the endovascular and surgical treatment of patients with cerebrovascular disorders at the…

Virtual Book Chat - with patient and author Rachel Paverman. Book name - To the Abyss

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To the Abyss: A book discussion with the Author, Rachel Paverman

Join us on Thursday, November 10 at 7pm Eastern Time, for a book discussion with author Rachel Paverman. Rachel will talk about her book “To The Abyss” and her experiences…

October Volunteer of the Month Shelley Stevens. Photo of a woman smiling, she has short dark hair, and dangly earrings.

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October Volunteer Spotlight

A Huge Thank you to our October Volunteer Spotlight, Shelley Stevens! Shelley has given so many hours of her time to help our community better understand the impact of what…

Volunteer of the month, Charles and Leah Sergent. Photo of a family with a tall man with short dark hair, a woman with a pony-tail and a young girl with red hair in a ponytail.

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Volunteer Spotlight

Please join us in thanking our September Volunteers of the Month: Charles and Leah Sergent. The Sergent family hosted a benefit concert on September 24th at Sutcliffe Park. They raised…

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Webinar: Cavernous Malformations and Aging Brain

Join us Thursday, October 20th, at 7:00 pm ET/4:00 pm PT for a webinar with Dr. Awad and learn about how cavernous malformations affect the aging brain. Dr. Awad, MD,…

August Volunteer of the Month, Chad and Mariah Cavallero. Photo of a man and woman both wearing pink shirts and baseball caps. Chad has a beard and is wearing sunglasses and Mariah has long brown hair.

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Volunteer Spotlight

Please join us in thanking our August Volunteers of the Month: Chad and Mariah Cavallero. The Cavallero’s hosted a golf tournament at Pelican Lakes on August 10th. They raised over $15,000…

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Webinar: What is “Leaky Gut” and How is it Healed?

Watch the recorded webinar at the following link: https://youtu.be/iuA0QzvukuM Join us Thursday, August 25th at 7:00 pm ET/4:00 pm PT for a webinar about gut health. Jennifer Franchak is a…

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Webinar: Let’s Talk About Emulsifiers

This webinar was recorded and can be found on our YouTube Channel: https://youtu.be/mLueRuDLriY Join Shelley Kummer-Stevens and Darla Clayton on May 25th at 7:00 pm Eastern for a conversation about…

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Dr. Lawton: Surgical Advances

Join us for what will certainly be a fascinating webinar update on neurosurgical advances with Dr. Lawton on April 21, 2022, at 7:30 Eastern Time, 4:30 Pacific Time. Dr. Michael…

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Dr. Awad Presents a Trial Upate and Q&A Session

Dr. Issam Awad, MD, MSc, FACS, founding Chairman of the Alliance to Cure Cavernous Malformation Scientific Advisory Board & John Harper Seeley Professor of Neurosurgery and director of Neurovascular Surgery…

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Webinar-Pediatric CCM and Surgical Advances

Join us January 27th at 7:00pm eastern, 4pm pacific as Dr. Edward Smith talks about Pediatric CCM and Surgical Advances. Dr. Smith is the Director of Pediatric Cerebrovascular Neurosurgery at…

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CCM Patient-Expert Course Launched!

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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Help the Alliance to Cure Cavernous Malformation Community by sharing a recipe for the 3rd Edition of the CCM Healthy Cookbook! In light of research indicating that diet, specifically emulsifier…

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