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!