About CADASIL Together We Have Hope Non-Profit Organization
CADASIL Together We Have Hope was established in 2005 as a nonprofit. CADASIL is a rare genetic disease which has no cure or treatment. Since it is a genetic disease, there is a 50 % chance of passing the mutation on to their children.
CADASIL is a rare, hereditary disease that is often misdiagnosed and underdiagnosed; patients suffer from damage within the small blood vessels, within the brain; CADASIL causes multiple strokes and TIAs (transient ischemic attacks; mini-strokes); This a progressively debilitating disease; The progress, severity and specific symptoms are variable from person to person and can include migraines, headaches, small strokes, strokes, gait problems, mood disorder, anxiety, depression, apathy, fatigue, cognitive decline, short term memory lost, dementia and many more symptoms. There are no age limit, gender or ethnicity boundaries with this disease.
The nonprofit has documented 1,400 confirmed cases worldwide. We are devoted to promoting awareness, education, support, and research for CADASIL patients, families, friends, and health care providers. We are dedicated to enhancing the established communication network among families as well as identifying sources of medical care and social services. We foster advocacy and open communication among all stakeholders as we work collaboratively to find a treatment or cure for CADASIL.