Emily's CLOVES Riders for Research 2021
We promote support, research and education in order to improve the lives of people living with CLOVES Syndrome.
Our vision is an improved quality of life for people living with CLOVES.
CLOVES Syndrome is an overgrowth disorder that affects multiple systems of the body. CLOVES stands for Congenital Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/Skeletal/Spinal anomalies. CLOVES syndrome is rare, progressive, complex and non-hereditary. The degree of severity can range from mild to severe and can cause pain, difficulty with mobility, loss of function in body systems and an array of neurological complications. There is no cure for CLOVES and there are limited effective treatment options. CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-overgrowth spectrum or PROS.