Webinars and Conference Presentation Videos

Alliance to Cure Cavernous Malformation frequently hosts informational webinars and patient conferences. This page includes recordings of these events as well as patient stories. Closed-captioning is available for most videos.

Recent Webinars



Focused Ultrasound Updates with Delaney Fisher, Ph.D.: April 2024


Big Picture Updates on Guidelines, Trials, and Biomarkers with Dr. Awad: February 2024

How to Host a Successful Fundraiser: January 2024


News and Updates with Connie Lee and Amy Akers: December 2023


Caregiver Support Meeting: November 2023


Surgical Perspective: Molecular Approaches to Ruptured Brainstem Cavernomas: October 2023


Talking to Kids about Cavernous Malformation, and Introducing the New Book – Biscochito: September 2023

Neuropsychology Evaluations – The Basics: July 2023

Coping with CCM Patient Panel Webinar: May 2023


Integrating anatomy, virtual reality, augmented reality, and physiological testing in brain: April 2023

Ask the Alliance with the Alliance to Cure Staff: February 2023

Headache and Pain Treatment for CCM Patients with Dr. Tarun Girotra: January 2023

Surgery for Intracranial Cavernous Malformation: December 2022

Cavernous Malformation and the Aging Brain: October 2022

Recursion’s REC-994 Sycamore Trial: News and Updates – September 2022

What is leaky gut and how can it be healed – August 2022

Make Your Insurance Work for You with Emily Brown from the Patient Advocate Foundation – June 2022

Let’s Talk About Emulsifiers with Shelley Stevens and Darla Clayton – May 2022

Dr. Lawton: Surgical Techniques and Q&A session – April 2022

Dr. Awad Presents a Trial Update and Q&A Session – February 2022

Dr. Ed Smith Talks about Pediatric CCM and Surgical Advances – January 2022

Empowerment through Research Participation – Dr. Connie Lee, Spencer Rosero – October 2021

Recursion Pharmaceutical REC-994 Clinical Trial – Dr. Lisa Boyette – September 2021

CCM Clinical Decision-Making – Dr. Jan-Karl Burkhardt – July 2021






Rapamycin, Atorvastatin Trial, Biomarkers, and More – Dr. Issam Awad – June 2021

PIK3CA Mutation and CCM – Dr. Mark Kahn and Dr. Doug Marchuk – June 2021

Solving the Problem of a Leaky Lesion – Dr.  Anuska Andjelkovic-Zochowski – May 2021

CCM Genetics and You – Dr. Connie Lee – April 2021

Understanding and Supporting Children with CCM – Dr. Christine Petranovich – March 2021

CCM Research and COVID Updates – Dr. Issam Awad, University of Chicago – February 2021

Accelerating Our Journey to a Cure – Dr. Connie Lee, Alliance to Cure Cavernous Malformation – December 2020

Atorvastatin Trial Update and Other CCM Research – Dr. Issam Awad, University of Chicago – October 2020

A Patient’s Guide to Imaging – Dr. Blaine Hart and Dr. Marc Mabray, University of New Mexico Health Sciences – September 2020

CCM Updates in the COVID-19 Era – Dr. Issam Awad, University of Chicago – August 2020


Blood Thinners and Cavernous Angioma – Dr. Kelly Flemming, Dr. Mark Ginsberg, and Dr. Miguel Lopez-Ramirez – May 2020

Atorvastatin Trial Update – Dr. Issam Awad – April 2020

Cavernous Angioma and COVID-19 – Dr. Kelly Flemming and Dr. Issam Awad – March 28, 2020

Patient Conferences

United States Patient Conference – November 2019

Dr. Issam Awad – Keynote Presentation

Dr. Min Park – Introduction to Cavernous Angioma

Dr. Atif Zafar – Treating Cavernous Angioma Symptoms

Dr. Ron Alfa – REC-994 and the CCM-Health Index

Dr. Mark Kahn – Recent Microbiome Research Progress

Diane Darcy, RD- CCM-Healthy Diet

Dr. Kimberly Foley – Treating Sleep Apnea

Dr. Amy Akers – 2019 CCM Research Summary

Patient Stories

Cavernous Angioma Awareness Month Finale, June 28th, 2020

Tyler Fairbank: Road to Recovery

Brian Wagner – If You Could See What I See