Stroke in children and young adults affects 10-20 people per 100,000 in the U.S. every year. The underlying cause of these strokes is unknown in more than 40% of cases. Single gene disorders are thought to account for a high proportion of these strokes, yet the underlying genetic causes in young people with strokes is poorly understood. Monogenetic diseases are often under-diagnosed due to rarity and lack of access to comprehensive genetic testing.
Young strokes occurring in isolation can be poorly understood. They may not be diagnosed as having a genetic cause, they may not be managed properly, patients and families may feel alone and helpless.
YGSA brings people with young strokes together for better diagnoses, improved care, shared learning, and accelerated treatment potential. Sharing patient data improves options for all.
Most importantly, the majority of these genes converge in a handful of biological pathways with common regulatory elements that could be targeted to restore vessel function.
To develop targeted treatment to decrease brain injury or prevent stroke, YGSA aims to accelerate bringing therapies to the clinic through collaborations to better understand the natural history of disease progression, biological markers, and how to restore the function of effected brain vessels.
Different single gene disorders, patients seeking a genetic diagnosis, investigators researching young strokes, and clinicians looking to improve care for young stroke patients can:
Moreover, due to the relative rarity of stroke at a young age and even lower incidence of hereditary cerebrovascular disorders, sufficient numbers of patients to provide the necessary power can only be achieved by concentrating expertise and cases from multiple centers and international collaborations in a large multi-center study.
To advance knowledge and treatments for children and young adults with hereditary cerebrovascular disorders by establishing an international network of researchers, clinicians, patients and patients advocates.
