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 Facebook group. She is always willing to lend a helping hand, for instance when we need help creating video clips or are seeking patient stories,…

Webinar: Tools to Talk to your Kids about Cavernous Malformation

Join us September 28th at 7:00 pm Eastern, 4:00 pm Pacific time for our monthly webinar. This month, we will discuss Tools to Talk to your Kids about Cavernous Malformation and read the new book Bizcochito. Presenters are Nicole Clayton, Licensed Professional Counselor and Wife and Mother of CCM patients and Darla Clayton, Clinical Psychologist,…

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 starring in our documentary “Eloquent” to supporting other community members, Rachel regularly goes out of her way to help. Most recently, Rachel has taken on…

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 Lee! After the conference, enjoy CCM family night at the Cincinnati Reds baseball game starting at 4:10 pm ET! Reserve your tickets for the game…

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, how it can help cavernous malformation patients, and offer general suggestions to help manage some of our patients’ more prevalent neuropsych difficulties. Register here  

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 learn about the latest research, engage with the CCM community, and unite with others who share the same passion for finding a cure. This live…

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 and we are so grateful for your efforts!  Thank you, Baron family! Sara is also volunteering to help with a new exciting project we can’t wait to…

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 helping organize our first inaugural Southern California Golf Tournament. His passion for giving back to the CCM community is truly inspiring. We are grateful for…

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, both with their diagnosis in general and the symptoms caused by their cavernous malformation. Register for the webinar here.

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 willingness to attend legislative meetings on behalf of our New Mexico Community has been instrumental in advancing our cause and making our voices heard.

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 Amber to thank. She is the designer of the Angioma Alliance logo, a lifelong creative, and a cavernous malformation survivor. Amber has been actively involved with the Alliance to…

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 health issues and CCM. There will be a Q&A as time allows. Dr. Flemming is a neurologist at the Mayo Clinic in Rochester, Minnesota, and…

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 connect you with volunteer opportunities you’ll enjoy and find fulfilling. When: Mar 9, 2023 07:00 PM Eastern Time (US and Canada) Register in advance for…

Celebrate Rare Disease Day With the Alliance

Join us Feb 26, 2023 02:30 PM Pacific Time, 5:30 Eastern Time Register to join us: https://us02web.zoom.us/meeting/register/tZAvf–trzgqHdwu4vLzz8JraI9DjEGJNxwt We will have a breakout room for children and family activities and another room for adults. This event is casual and fun. Expect to have some laughs getting to know others affected by cavernous malformation and celebrating Rare Disease…

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 the Alliance” Webinar! What questions do you have about the Alliance, CCM research, fundraising, centers of excellence, support opportunities, advocacy or anything else alliance or…

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 us by writing cards to thank our donors for their support. Thank you for all you do for our community.

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 of our community and has been a tremendous support to many of our members. Thank you, David for all you do for our community.

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 neurology at the University of New Mexico School of Medicine. His clinical interests include acute stroke care, secondary stroke prevention, telestroke, and medical education. His…

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 optional. There is no charge to join us for this event, we’re excited for a chance to gather together! RSVP here: https://angioma.networkforgood.com/events/50815-eloquent-chicago January 7th, 11:30 to…

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 about Matt’s work so I’m excited to introduce to the man behind our documentary, Eloquent. Matt worked on a project for the Alliance a couple…

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 Mayo Clinic in Rochester, MN. He completed his neurosurgical training at the University of Virginia in Charlottesville, Virginia. In addition, he has completed subspecialized training…

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 this incredible opportunity to directly fund the cure for cavernous malformation by making a donation today! Read Connie’s end-of-year letter here: https://www.alliancetocure.org/wp-content/uploads/2022/11/EndOfYearLetter2022.pdf

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 as a cavernous malformation survivor. Register for the meeting at the following link: https://us02web.zoom.us/j/84982508684?pwd=WUoxSG9NVGNlWlZMeGtrZ1U0TlpZUT09

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 we eat on our guts. She has poured over articles to figure out which food additives have a negative impact on our guts and which…

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 almost $14,000 at their event which will help our journey toward a cure for cavernous malformation! Thank you, Charles and Leah, and all the other…

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, MSc, FACS, is the founding Chairman of the Angioma Alliance Scientific Advisory Board & is the John Harper Seeley Professor of Neurosurgery and director of…

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 the REC-994 Sycamore Trial. Dr. Morrison is the VP for Clinical Development, Neuroscience, and Rare Disease for Recursion. There will a Q&A at the end…

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 showing at your home or another venue. ———————————— Join us at the Ambler Theater in Ambler, PA, on Sunday, September 25th at 10 am for…

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 at their event which will help our journey towards a cure for cavernous malformation! Thank you, Chad and Mariah, and all the other volunteers involved…

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 certified functional nutritional counselor and cavernous malformation patient. She will be teaching about the ins and outs of “leaky gut”, or increased intestinal permeability which…

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: The founder’s story A look into the future of Alliance to Cure Cavernous Malformation A day in the life of a few of our patients…

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 emulsifiers. We will cover the basics, like what an emulsifier is and why people with CCM might consider avoiding them, to more complex topics. Shelley…

Strides To Cure CCM

Alliance to Cure Cavernous Malformation turns 20! To note this milestone, join us for our national virtual Strides to Cure CCM 5k on May 15th! Gather your friends and family to walk, run, or roll wherever you are. Registration is free with a recommended donation of $20 for 20 years. Raise or donate $20 to…

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 Lawton, is the President and CEO of Barrow Neurological Institute and the Chair of the Department of Neurosurgery. He is board certified by the American…

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 at the University of Chicago will update the Alliance to Cure Cavernous Malformation community on the Atorvastatin Clinical Trial. The session will conclude with a…

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 Boston Children’s Hospital which is an Alliance to Cure Cavernous Malformation Center of Excellence. There will be a question and answer period at the end…

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 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…

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 and artificial preservative use, has a negative effect on the gut lining and cavernous malformation health, we are soliciting recipe submissions for a cookbook to…

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 malformation. 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 malformation (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 malformation 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 Alliance to Cure Cavernous Malformation 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…

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 Alliance to Cure Cavernous Malformation Community for stepping up to help make the art auction happen. To browse the…

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 Malformation Scientific Advisory Board, shares updates from the world of cavernous malformation (cavernous malformation, cavernoma) research, including the atorvastatin trial being conducted at the University…

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 personal experience living with a brain injury. We plan to have a question and answer period as time allows. This meeting was recorded and can…

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 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…

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 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…

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 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 emulsifier and artificial preservative use, has a negative effect on the gut lining and cavernous malformation health, we are soliciting recipe submissions for a cookbook…

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 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…

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 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 Alliance to Cure Cavernous Malformation patients and caregivers who are affected by spinal cavernous malformation (cavernoma, cavernous malformation). Please join us to share information and discuss coping…

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 Company in Denver, which exclusively casts actors with disabilities. Maggie will be sharing her experiences with cavernous malformation brainstem hemorrhage and recovery, spearheading a group…

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 to Cure Cavernous Malformation Scientific Advisory Board, will share with us the latest news on the progress of the atorvastatin trial to treat cavernous malformation…

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 studies documenting what they’ve and helping us to gain a better understanding of the impact of cavernous malformation, 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 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 generate critical data to understand cavernous malformation and how to treat the illness. Every profile helps! Each registry profile adds to our body of knowledge….

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!