Dear friends,
As family members of cavernous malformation patients, we are in urgent pursuit of better treatments and a cure for this rare disease that causes so much suffering and anxiety.
Cavernous malformation is a rare disease where leaky blood vessels form in the brain or spinal cord and bleed, leading to debilitating symptoms in an estimated 138,000 Americans. Patients with this diagnosis may suffer symptoms like migraines, seizures, and strokes. The only treatment is brain or spine surgery, which can lead to additional deficits.
But we are hopeful: with your generous support in 2023, we are closer than ever to better treatments and a cure.
The Alliance to Cure Cavernous Malformation is the leading global organization driving research, expanding access to care, and supporting patients. Since our founding in 2002, we have served as a hub that connects researchers, clinicians, patients, and pharmaceutical and government leaders working to find a cure for cavernous malformation.
You’ll see in our impact report that 2023 was a landmark year. We drove research forward for 10 possible treatments, expanded expert care to 20 Centers of Excellence and Clinical Centers, provided support and education to 25,000 patient and their families, and received recognition for our rare disease organization leadership.
We invite you to click the link above to see the impact donors like you have made possible.
Together, we will make better treatments and a cure for cavernous malformation a reality.
In gratitude,
Connie Lee, Founder and CEO, Alliance to Cure Cavernous Malformation
David Borland, Board Chair, Alliance to Cure Cavernous Malformation
