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…

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…

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…

Cincinnati Children’s Patient Conference

Saturday, September 21st, 2024, 10:30-12 pm ET CCM Patient Conference 3333 Burnet Ave Cincinnati, OH 45229 Location D- D2.22 [second floor of Location D, Room 22] Reds vs Pirates baseball…

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…

New Patient Registry

We are excited to announce that we have updated our patient registry to a new platform! There are two options to create an account in our new registry: Patient account-this…

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…

There’s Still Time to Register for CCM Family Weekend 2024

We have a few rooms available on a first-come, first, served basis!  Thanks to the support of a generous donor, the Alliance to Cure will host its first Family Weekend….

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…

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…

Rocking for a Cure

June 1st, 2024; 2:30 pm -6:30 pm ET Molloy’s Irish Pub, Gambrills, MD You are invited to: Rocking for a Cure! A fundraising concert event benefiting the Alliance to Cure…

Strides To Cure CCM

May 15th-June 15th The Strides to Cure CCM 30 Miles in 30 Days Challenge is an inspiring and empowering fundraising initiative designed to raise awareness and support for cavernous malformation…

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)….

Chip-in for a Cure Golf Scramble

Join us on the prestigious PB Dye golf course for a fun day of golf and community all benefiting Alliance to Cure Cavernous Malformation. The format of the golf scramble…

Swinging for a Cure Golf Scramble

Join us on the course for a fun day of golf and community, benefiting Alliance to Cure Cavernous Malformation. The format of the golf scramble is such that each golfer…

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…

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:…

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….

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…

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….

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…

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…

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…

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…

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…

3rd Annual Arizona Awareness Walk

Join our 3rd Annual Arizona Walk to Support the Alliance to Cure Cavernous Malformation! Together, we can make a profound difference in the lives of those affected by Cavernous Malformation….

9th Annual Malibu Beach Walk

Join Our Malibu Walk/Fun Run to support the Alliance to Cure Cavernous Malformation! Together, we can make a profound difference in the lives of those affected by cavernous malformation. Let’s…

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…

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…

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…

Cincinnati, August 5th: Family Conference and Baseball Game

Cincinnati Children’s is excited to host a family conference on August 5th from 12- 2 pm ET, featuring presentations from their top experts in CCM care, including special guest Connie…

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,…

Empower 2023

Empower 2023 is our internationally broadcast event to empower individuals to take action toward finding a cure for cavernous malformations. The event will provide a unique opportunity for viewers to…

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…

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: 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,…

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…

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…

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…

Volunteer Interest Meeting

Interested in learning more about volunteering for the Alliance? We’re planning a casual meeting to learn what volunteer gigs interest our members, what skills folks have, and how we can…

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 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…

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…

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…

Eloquent Documentary: Chicago

Come enjoy Eloquent, the first-ever documentary about patients and families dealing with cavernous malformation, meet other patients, and chat with Dr. Awad! Light refreshments will be served. Fancy dress is…

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: 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…

Connie Lee’s End of Year Message

Donations gratefully accepted at the following link: https://angioma.networkforgood.com/projects/160164-alliance-to-cure-cavernous-malformations   All giving through the end of the year will be designated toward funding several potential research projects. Consider being part of…

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 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 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…

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,…

Webinar: REC-994 Sycamore Trial News and Updates

You can watch the recorded webinar at the following link: https://youtu.be/MAW6j60YSjg Join us on September 29th at 7:00 pm ET/4:00 pm PT as Glenn Morrison, MSc, Ph.D. shares updates on…

Documentary Debut and Benefit Concert

  UPDATE:  Eloquent will be available for private showings for several months. It was also entered in film festivals around the country. Please contact Lindsay Ramirez to arrange a private…

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…

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…

Promise 2022 Recording now Available

Get a behind-the-scenes look at the impact of our cavernous malformation community, how your contributions have helped, and why a cure is within our reach.  Some of the highlights include:…

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…

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…

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…

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…

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…

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…

Webinar: Recursion Pharmaceutical’s REC-994 Trial for CCM

This webinar is now available on our YouTube channel. On September 30th at 7 pm ET, 4 pm PT, please join Dr. Lisa Boyette, Recursion Pharmaceuticals’ Senior Director of Medical…

Celebrating Together for a Cure 2021

Thank you for celebrating the opportunity to accelerate a cure with us!!! Our event has ended, and we are incredibly grateful for our community’s participation in this celebration. There were…

Webinar – Dr. Jan Burkhardt, Penn Medicine – CCM Clinical Decision-Making

Date/Time:  July 29 at 7 pm ET, 4 pm PT.  Please join Dr. Jan-Karl Burkhardt, cerebrovascular neurosurgeon at the University of Pennsylvania Medicine, for a discussion of CCM clinical decision-making….

Webinar – Dr. Issam Awad – Rapamycin, Atorvastatin, and more

A recording of this webinar is now available on our YouTube channel.   Please join Dr. Issam Awad on Wednesday, June 16th at 7 pm ET, 4 pm PT for…

Biomarker Development Project in El Paso Seeking Participants

Texas Tech University Health Sciences Center El Paso has begun a project to identify the genetic factors that cause cerebral cavernous malformations (CCMs) and validate new potential blood biomarkers for…

Webinar – PIK3CA Mutation and CCM Lesion Growth

  The recorded webinar is now available online on our YouTube channel.   Join us on Tuesday, June 8th at 1 pm ET, 10 am PT for a webinar discussing…

Webinar: Cerebrovascular Malformation – Solving the Problem of a Leaky Lesion

NOTE: A recording of this webinar is now available on our YouTube channel. ———————————– Please join us in welcoming Dr. Anuska Andjelkovic-Zochowski, M.D., Ph.D. of Michigan Medicine on Thursday, May…

Webinar- CCM Genetics and You

  A recording of this webinar is now available on the Alliance to Cure Cavernous Malformation YouTube channel. ——————– Cavernous angioma genetics can be confusing. The illness may be caused…

Webinar: Understanding and Supporting Children with Cavernous Malformations

A recording of this webinar is available on our YouTube channel. Please join us on March 25th for a webinar on Understanding and Supporting Children with Cavernous Malformations featuring pediatric…

Rare Disease Day Art Auction

Check out the art auction at www.biddingforgood.com/angioma. New art is a fantastic way to make an exciting change in your home decor, and help a great cause at the same…

CCM Research and COVID-19 Updates – Dr. Issam Awad

Join us on Thursday, February 25th at 7 pm ET (6 pm CT,  5 pm MT,  4 pm  PT) as Dr. Issam Awad, chair of the Alliance to Cure Cavernous…

Learning to Live with Brain Injury

The Three Rivers Alliance to Cure Cavernous Malformation Community invites you to join author and Alliance to Cure Cavernous Malformation member Deb Brandon as Deb shares with us about her…

Cavernous Angioma 101

If you or a loved one are newly diagnosed, please join us on the first Thursday of every month at 5 pm Pacific, 8 pm Eastern for CCM101. We will…

December 3rd Webinar: Let’s Accelerate our Journey to a Cure!

On December 3rd at 7 pm EST (6 pm CT, 5 pm MT, 4 pm PT), Connie Lee, Alliance to Cure Cavernous Malformation President & CEO, will be hosting a…

CCM Warrior Recognition and Fundraiser

We are excited about this opportunity to recognize the CCM Warriors in our community! This disease creates challenges and barriers that make accomplishments that may seem ordinary extraordinary and we…

Submit a Recipe for the CCM Healthy Cookbook

Help the Alliance to Cure Cavernous Malformation Community by sharing a recipe for the 2nd Edition of the CCM Healthy Cookbook! In light of new research indicating that diet, specifically…

Online Support Group Meeting Weekly

Alliance to Cure Cavernous Malformation has added several online video groups for conversation and support. Our weekly group meets Thursdays at 8 pm ET, 5 pm PT via Zoom. On…

CCM Warrior Recognition Video Finale

Join us for a video finale in recognition of CCM Warriors! You can view the video of the finale on our YouTube Channel at: https://youtu.be/JB8x-FzEBMU

Orange County CA Staggered-Start Walk

Register/donate: give.classy.org/OCwalk Join us Saturday, September 19th for a stroll around the lake at Florence Joyner Olympiad Park in Mission Viejo. Our event will not look the same as usual, but…

Spinal Cavernous Angioma Support Group Meeting

Please join us on Sunday, September 20th at 2 pm PT, 3 pm MT, 4 pm CT, 5 pm ET, 8 pm GMT. This Zoom meeting is for Alliance to…

Meeting Maggie Whittum: Recovery and Re-emergence

Maggie Whittum is re-emerging into life as an artist after having survived a massive cavernous malformation brainstem hemorrhage in 2014 at the age of 33. She performs with Phamaly Theatre…

Atorvastatin Trial Update and Other News

Please join us on Thursday, October 15th at 7 pm ET, 6 pm CT, 5 pm MT, 4 pm PT. Dr. Issam Awad, cerebrovascular neurosurgeon and chair of the Alliance…

Webinar: A Patient’s Guide to Imaging

Dr. Blaine Hart and Dr. Marc Mabray, neuroradiologists at the University of New Mexico, have read more cavernous malformation MRIs than any doctors in the world. They have published numerous…

Webinar: CCM Updates in the COVID-19 Era, Recording Available

This webinar is now available for viewing on our YouTube channel with closed captioning.          

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…