Alliance to Cure Cavernous Malformation

10/29/2026

Today is — a day recognizing all the children living with neurological conditions and the family, community, and professionals who support them.

We want to give a huge shoutout to all the pediatric neurologists who help give kids and their loved ones dealing with CCM the treatment, support, and resources they need to thrive, and to the families that are caring for a child with CCM.

10/28/2026

We have ONLY FOUR more days! From now until the end of October, any one-time donation will be DOUBLED, and a monthly gift is matched at its full first-year value.

Generous donors have provided $15,000 in matching funds, and we're halfway to our goal with only a few days left! Become a Steady Supporter now — a $5/month gift becomes a $60 match; a $25/month gift becomes $300, and so on.

With this unique opportunity, your gift can go further to provide life-changing support for CCM patients and families: alliancetocure.org/donate

10/23/2026

A new study from Uppsala University in Sweden has found a potential CCM treatment from an existing cancer drug.

The team of researchers, led by Alliance Scientific Advisory Board member Dr. Peetra Magnusson, tested dabrafenib in mice. The drug, which is already approved in the US and Europe to treat certain cancers, reduced leakage from CCM lesions and shrank the total area of the lesions.

While this study reveals new possible approaches to treating CCM, there is still more work to be done. The research was conducted on mice and only for days to weeks. Longer studies will need to be conducted to test months of treatment, including finding the right dose and understanding side effects of long-term use in people.

The Alliance does not encourage starting, stopping, or changing any medication based on this study. If you have questions, please raise them with your doctor.

Read more about the research here:

An existing cancer drug slowed cavernous malformations in mice. Here’s what that means. A research team at Uppsala University in Sweden has published a new study in Science Translational Medicine...

10/22/2026

Jennifer and John have been monthly supporters of the Alliance since their 6-year-old son AJ got treatment for his seizures at a CCM Center in 2025. John even secured a donation match through his employer. The commitment of steady contributors like Jennifer and John helps advance critical research for a CCM cure and provide the care that helps our community.

Today, they have a plea: “If you can, please donate. No child should have to have brain surgery, or seizures, or miss out on the fun things that other kids get to do. If you work for a big corporation, consider asking them if they will match your donation. It never hurts to ask!”

Generous donors have provided $15,000 in matching funds. This means a monthly gift will be matched by its first-year value — a $5/month gift becomes a $60 match; a $25/month gift becomes $300. One-time gifts are welcome too, and are matched dollar for dollar.

Will you become a steady supporter now?
https://angioma.networkforgood.com/projects/306097-we-got-you

10/22/2026

Save the Date for Thursday, October 29 at 7:00 PM ET

Join us for this month's virtual webinar: Coping with Fatigue & CCM

Fatigue is one of the most common symptoms experienced by people living with CCM. In this webinar, Natalie Neale, MD, of UCSF Health, covers the common causes of fatigue in CCM, when it's time to bring it up with your care team, and practical ways to manage your energy day-to-day.

Bring your questions and leave with tools you can start using right away.

Register here: https://us02web.zoom.us/webinar/register/WN_tK-jrLPTQTuk0hCzYFAtnA #/registration

10/08/2026

"The Alliance to Cure saved my life."

In July, Karen joined us at Family Weekend, less than a year after her life-changing CCM diagnosis and brain surgery.

The Alliance's support groups have been a lifeline and invaluable resource as she's navigated a new world with CCM. "It's critical for me and my recovery," she shared with us.

We're 1/3 of the way to meeting our current match opportunity, and we're asking you to help us get to our goal so we can continue to provide vital support and connection to CCM patients like Karen.

Right now, if you become a monthly donor, the annual value of your first year will be matched, before our matching funds run out. Will you become a steady supporter today?

Meet more CCM community members and support now: https://angioma.networkforgood.com/projects/306097-we-got-you

10/06/2026

We're building global partnerships to find a cure for CCM.

Last week, our CEO Connie Lee and Chief Scientific Officer Angela Glading were in London to share about the Alliance's REC-994 program acquisition and cutting-edge CureDriver™ Lab work with potential industry collaborators. We're grateful to Aspire Biosciences for bringing together biotech companies and patient organizations to drive medical advancements.

It was a pleasure to connect with Aerska, Chiesi Global Rare Diseases, Hado Therapeutics, MiRare Therapeutics, Nascent Therapeutics, Neuroplast, and Shionogi — thank you for taking the time to meet with us and understand why we fight for a CCM cure and what we have to offer. We look forward to future collaboration on CCM treatments.

Learn more here about our research programs and capabilities:https://www.alliancetocure.org/wp-content/uploads/2026/10/Alliance-Programs-and-Capabilities-.pdf

09/28/2026

We really appreciate this shout out from Johnnyroyvanzant, one of the Alliance's biggest advocates and supporters! Together we are driving a cure for cavernous malformation!

09/24/2026

We Got You: Stories from CCM Family Weekend

Our CCM Family Weekend this summer offered patients and families a chance to meet the people who understand what they're going through. For many who have built life-ling connections over years in our support groups, meeting in person is an unforgettable experience. Watch what that connection means to them, in their own words.

Connect today: alliancetocure.org/connect

Support and donate: alliancetocure.org/donate

09/23/2026

To our CCM community — we got you.

This July, patients and families affected by CCM gathered for our Family Weekend. Hear below what they had to say about how the community shows up for them and how you can get involved.

Right now, we have an exciting match opportunity. When you make a monthly gift, its annual value will be matched — so a $10/month gift unlocks a $120 match. One-time gifts are matched too, while matching funds last. Help us support our community so that we can support you.

Watch the full video now: https://angioma.networkforgood.com/projects/306097-we-got-you