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Angioma Alliance COVID-19 Registry

Please read the Angioma Alliance Scientific Advisory Board Consensus Statement on COVID-19 and cavernous angioma (CCM) and the Scientific Advisory Board Statement on COVID-19 Vaccines. We request that patients or families report to the newly established Angioma Alliance COVID-19 Registry any patient with cavernous...

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Atorvastatin Trial Now Enrolling

Why is this important? Statins are a class of drugs commonly used to treat high...

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Update Your Cavernous Angioma Patient Registry Profile

We've upgraded the Registry with new surveys and new info. Update your profile or join...

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

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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…

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Cavernous Angioma 101
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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…

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Cure Accelerator Initiative
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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…

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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…

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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…

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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…

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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

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Orange Co Walk 2020
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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…

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Spinal Cord Cavernous Angioma
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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…

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Maggie Whittum
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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…

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Dr. Issam Awad
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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….

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Imaging Webinar Information
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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…

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Issam Awad, MD, MSc, FACS
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Webinar: CCM Updates in the COVID-19 Era, Recording Available

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

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Covid-19
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Angioma Alliance COVID-19 Registry

Please read the Angioma Alliance Scientific Advisory Board Consensus Statement on COVID-19 and cavernous angioma (CCM) and the Scientific Advisory Board Statement on COVID-19 Vaccines. We request that patients or families report to the newly established Angioma Alliance COVID-19 Registry any patient with cavernous angioma who tests positive for COVID-19. After entering your information, you’ll be…

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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…

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It's time for a finale!
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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!

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University of Chicago
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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…

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US Capitol
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CCM Care Act Introduced

Legislation calls for increased research, resources.  Watch our tutorial video and read about our national legislation to learn how easy it is to advocate for a cure!      

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News & Updates

Resilient

Our word for 2021 is #Resilient

Each year, Angioma Alliance members choose a word to capture a theme for the coming...

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pill bottle

New Propranolol Study

A newly published paper in the Journal of Clinical Investigation examines the impact of the...

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2020: A Look Back and a Look Ahead

Dear Friend of Angioma Alliance, COVID-19 has changed the face of this year, but it...

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Covid-19

SAB Statement on COVID Vaccines

December 8, 2020 CONSENSUS STATEMENT BY THE ANGIOMA ALLIANCE SCIENTIFIC ADVISORY BOARD ABOUT COVID-19 VACCINE...

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Netflix Series Away

Netflix Series “Away” Features CCM

The Netflix series Away, starring Hilary Swank, has included cerebral cavernous malformations as a major...

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Jackson Memorial Hospital

University of Miami-Jackson Health System Recognized

We are pleased to announce that the University of Miami-Jackson Health System has been recognized...

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Microbiome

New Microbiome Study Published

For those of you who participated in the microbiome study by sending in a sample...

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Covid-19

COVID-19 and Cavernous Angioma Public Statement

The COVID-19 situation is fluid. Please follow your medical care provider's advice for care. If you...

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US Capitol

CCM Care Act Introduced

Legislation calls for increased research, resources.  Watch our tutorial video and read about our national...

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