CCM Patient-Expert Course Launched!

Be recognized for what you know! Angioma Alliance patients and families often become experts in cavernous angioma (CCM) out of necessity.  Angioma Alliance offers a structured way to facilitate learning about the illness to improve medical decision-making and peer support through our Patient-Expert Certificate Program. This 5-hour multimedia interactive course is not a substitute for…

Help the Angioma Alliance Community by sharing a recipe for the 3rd Edition of the CCM Healthy Cookbook! In light of research indicating that diet, specifically emulsifier and artificial preservative use, has a negative effect on the gut lining and cavernous angioma health, we are soliciting recipe submissions for a cookbook to help our families…

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 Affairs, who will be sharing details of the new REC-994 trial for cavernous angioma. REC-994 is the first industry-sponsored medicine to reach trials for our…

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 over 60 watch parties, large and small, around the country. We raised $197,000 to accelerate the cure for cavernous angioma (CCM). If you missed it,…

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. Dr. Burkhardt will review factors taken into consideration when deciding between surgery versus conservative management of a cavernous angioma lesion. There will be an opportunity…

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 this research and clinical trial update. He will be discussing rapamycin as a treatment for CCM, news from the atorvastatin trial and biomarker development, and…

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 early detection. They are seeking to recruit Hispanic CCM patients to donate a blood sample and clinical data.  Blood biomarkers will allow us to predict…

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 new research on the causes of CCM lesion growth. CCM lesions develop when blood vessel cells (endothelial cells) lose the function for one of the…

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 19th.  Her team studies the underlying mechanisms of the blood-brain barrier and lesion hyperpermeability in CCM in order to identify specific targets triggering microvascular barrier…

Webinar- CCM Genetics and You

  A recording of this webinar is now available on the Angioma Alliance YouTube channel. ——————– Cavernous angioma genetics can be confusing. The illness may be caused by hereditary genetic mutation or can occur spontaneously.  Please join us on Thursday, April 22, at 7 pm ET, 4 pm PT, for a webinar with Dr. Connie…

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 neuropsychologist Dr. Christine Petranovich. Dr. Petranovich practiced at the University of New Mexico for many years where she saw and studied dozens of children with…

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 time! Thank you to the Tri-State Angioma Alliance Community for stepping up to help make the art auction happen. To browse the auction on a…

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 Angioma Alliance Scientific Advisory Board, shares updates from the world of cavernous angioma (cavernous malformation, cavernoma) research, including the atorvastatin trial being conducted at the University of Chicago. He…

Learning to Live with Brain Injury

The Three Rivers Angioma Alliance Community invites you to join author and Angioma Alliance member Deb Brandon as Deb shares with us about her personal experience living with a brain injury. We plan to have a question and answer period as time allows. When: Jan 17, 2021 01:00 PM Eastern Time (US and Canada) Register…

Cavernous Angioma 101

If you or a loved one are newly diagnosed, please join us on Thursday, January 7th at 5 pm Pacific, 8 pm Eastern for this Zoom meeting!  We will have a brief presentation followed by an extended opportunity to ask questions. We are not doctors, but we can share information and our experiences. This is a…

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, Angioma Alliance President & CEO, will be hosting a webinar in which she will be sharing an exciting new 2021 initiative that will move us to the next level in research and outreach. We are poised to…

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 want to celebrate those accomplishments with our community members. Participating is easy, just set up a fundraiser page through Classy or Facebook and share some…

Submit a Recipe for the CCM Healthy Cookbook

Help the Angioma Alliance Community by sharing a recipe for the 2nd Edition of the CCM Healthy Cookbook! In light of new research indicating that diet, specifically emulsifier and artificial preservative use, has a negative effect on the gut lining and cavernous angioma health, we are soliciting recipe submissions for a cookbook to help our…

Online Support Group Meeting Weekly

Angioma Alliance 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 the first Thursday of each month we host a meeting for newly diagnosed members and their loved ones to learn more. Support groups are facilitated by Lindsay Ramirez…

CCM Warrior Recognition Video Finale

Join us for a video finale in recognition of CCM Warriors! If you’d like to be included in our CCM Warrior video please reach out to Darla – darla@angioma.org or send a short (2-3 minute) video sharing your CCM Warrior story to: https://www.dropbox.com/request/YN4q78Wz2CMIxtzdsjJB

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 we will continue to raise awareness and support during these uncertain times. We are asking teams of up to 10 people to sign up for…

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 Angioma Alliance patients and caregivers who are affected by spinal cavernous angioma (cavernoma, cavernous malformation). Please join us to share information and discuss coping strategies. Registration is…

Meeting Maggie Whittum: Recovery and Re-emergence

Maggie Whittum is re-emerging into life as an artist after having survived a massive cavernous angioma brainstem hemorrhage in 2014 at the age of 33. She performs with Phamaly Theatre Company in Denver, which exclusively casts actors with disabilities. Join us on September 23rd at 7 pm ET, 4 pm PT when Maggie will be…

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 Angioma Alliance Scientific Advisory Board, will share with us the latest news on the progress of the atorvastatin trial to treat cavernous angioma with symptomatic hemorrhage….

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 angioma MRIs than any doctors in the world. They have published numerous studies documenting what they’ve and helping us to gain a better understanding of the impact of cavernous angioma, and particularly, familial disease. This webinar was…

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 Angioma Patient Registry Profile

We’ve upgraded the Registry with new surveys and new info. 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 generate critical data to understand cavernous angioma and how to treat the illness. Every profile…

Finale! June Cavernous Angioma Awareness Month

If you missed our live Cavernous Angioma Awareness Month finale, you haven’t lost your chance to see it. You can find a recording on our YouTube channel. Enjoy!

Atorvastatin Trial Now Enrolling

Why is this important? Statins are a class of drugs commonly used to treat high blood pressure. Statins have wide-ranging effects in the body and are known to alter many different chemical signaling systems. In recent years, CCM researchers have shown that the Rho Kinase (ROCK) inhibiting action of statins may have potential therapeutic effect…