Alliance to Cure Breaking Barriers program wins Justworks grant award

Five Alliance to Cure Cavernous Malformation staff members standing together, holding and looking through a frame with the Alliance to Cure logo.Alliance to Cure Cavernous Malformation receives $25,000 grant from Justworks to increase diversity in neurology in partnership with HBCU medical schools.

CHARLOTTESVILLE, VIRGINIA – October 11, 2023 – The Alliance to Cure Cavernous Malformation, the leading international patient research organization with a mission to inform, support, and mobilize those affected by cavernous malformation and drive research for better treatments and the cure, today announced a new program in partnership with HBCU medical schools to increase diversity in neurology through a $25,000 grant awarded by Justworks through its Spring Forward Fund.

“This initiative will enable more medical students from historically Black colleges and universities to participate in advanced research and training in neurology, including that related to cavernous malformation and ultimately its treatment,” said Connie Lee, CEO of the Alliance to Cure Cavernous Malformation. “Justworks’ generous grant supports more equitable access to neurological clinical care and brings us closer to a permanent cure for cavernous malformation.”

Cavernous malformation, also known as cavernoma, is a rare disease that causes lesions to develop in the blood vessels of the brain or spinal cord, leading to seizures, strokes, and in some instances, death. Black patients are historically underrepresented in cavernous malformation clinical and research databases.

In the past three years the Alliance to Cure Cavernous Malformation’s efforts have contributed to a nearly 400 percent increase in the number of Black patients enrolled in the International Cavernous Malformation Patient Registry, allowing ongoing clinical trials like Recursion’s REC- 994 trial, the first clinical trial to test a drug developed specifically for cavernous malformation, to enroll a diverse patient base in 2023.

About Alliance to Cure Cavernous Malformation

Alliance to Cure Cavernous Malformation, formerly known as Angioma Alliance, is a 501(c)3 non-profit with a mission to inform, support, and mobilize those affected by cavernous malformations and drive research for better treatments and the cure. The organization is the winner of the 2023 National Organization for Rare Disorders Abby S. Meyers Leadership Award.

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