Treatment for Cavernous malformations is within our reach

Unless we've talked about it before, you've probably never heard of cerebral cavernous malformations (CCM).

I was born with this rare disease, which causes malformed blood vessels called cavernomas to develop in the brain and spinal cord. These lesions can leak, ooze, or hemorrhage, causing neurological symptoms and permanent damage. They can also cause symptoms simply because of their size and location.

I've lived with symptoms since childhood. Bleeding from multiple cavernomas, including in my spinal cord, eventually left me disabled.

For many people with CCM, the disease is severely life-altering. Children and adults alike can face strokes, seizures, chronic pain, cognitive difficulties, paralysis, and other neurological symptoms that can change the course of an entire life.

The only treatment is brain or spinal cord surgery, which is often risky and, in many cases, not recommended at all. I'm one of those patients. Surgery isn't considered a safe option for me.

I've seen stories of children enduring brutal brain surgeries because there was no other choice. I've seen friends and fellow patients lose mobility, independence, careers, and pieces of themselves to this disease, and I'm living those same losses.

For the first time in my life, there are promising non-invasive treatments.

A clinical trial for targeted ultrasound as a potential CCM treatment could begin enrollment this year if we can secure the funding needed to launch it. The Alliance to Cure Cavernous Malformations is also furthering their work on a potential drug, as well as continuing to work with surgeons, neurologists, researches, hospitals, and their fellow patients (the organization is almost entirely patients and family of patients)

The goal of the trial is to improve blood vessel stability, reduce symptoms, and slow or prevent disease progression.

This matters deeply to me, not just because I live with CCM, but because I've spent years watching this disease take so much from so many people while we had no medical treatment... only symptom management for the symptoms that can be managed.

A treatment that reduces bleeding risk, slows progression, preserves function, or helps people avoid surgery could change countless lives. Targeted ultrasound is very promising and, proven safe and effective, could be available quickly.

I've spent years trying to build a life around the limitations CCM imposed on me. I still have a good life. I still find joy. But I also know what this disease has cost me, and I know what it continues to cost others every day.

That's why I'm asking for your help.

If you're able, please consider making a donation to support this research. Every contribution helps move this trial closer to reality.

And if donating isn't possible, sharing this fundraiser is incredibly valuable too. Awareness matters. Every person who sees this post is another person who learns that CCM exists and that we need help.

Thank you for reading, sharing, donating, and caring.