Alliance To Cure
The Alliance To Cure is the rare disease patient advocacy organization for cerebrovascular angiomas. They maintain the world’s largest patient registry for rare disease, creating the infrastructure needed to advance research and accelerate a cure.
Cerebrovascular angiomas, also known as cavenomas or cerebral cavernous malformations CCM’s are capillary malformations found in the central nervous system that rupture and cause acute neurological events.
In 2002, Dr. Connie Lee founded the Alliance To Cure to serve the CCM patient and research community. Over the last twenty years, the organization has grown from a mother’s kitchen table to an international partnership, connecting patients, researchers, doctors, hospitals and pharmaceutical companies with an interest in eradicating this rare disease. The organization focuses on creating shared resources for patients, establishing centers of excellence, maintaining a client registry and DNA + tissue bank and genetic testing. Most importantly, the Alliance To Cure is the only entity able to move the needle on research. By attracting the philanthropy needed to support the science-to-cure process, the Alliance To Cure collaborates with industry partners who have the financial ability to support trials and take them to market.
Alliance To Cure began with a mother, an infant, and a need. When Julia Lee was born, no one knew there were abnormal blood vessels in her brain. At four months old, she was rushed into emergency surgery, dying from a brain hemorrhage. Once a year for four years, Julia returned to the operating room to undergo another life-saving operation. It became clear her illness would be a lifelong challenge.
Scouring the internet, her mother Connie Lee found nothing about cerebral cavernous angioma, the rare illness causing Julia’s brain hemorrhages. No patient groups, no way to connect with other parents or researchers. In 2002, to fill the void for all patients and families, Connie, with the help of a group of dedicated experts, started Alliance To Cure. Its mission is to inform, support, and empower individuals affected by cavernous angioma and drive research for better treatments and a cure.
“We are undertaking big projects that save lives and improve the quality of care for thousands of CCM patients around the world. We look forward to a world where no child lives in fear of brain hemorrhage and its crippling effects, where no adult is disabled by seizure or paralysis. This vision is within our reach. “
Connie Lee, Psy.D.
President and CEO