Our current board is comprised of parents who's children have been diagnosed with Alexander Disease. Alexander Disease (AxD) is a very rare, usually fatal, neurological disorder that can cause a range of motor and cognitive difficulties including seizures; difficulty swallowing, feeding, and vomiting; and severely impaired balance and coordination. AxD is caused by the presence of abnormal forms of the protein “GFAP”, which leads to the formation of characteristic structures known as “Rosenthal fibers” in the central nervous system. While often detected in infancy and early childhood, recent improvements in diagnosis and classification have shown that AxD occurs with similar frequency across all ages.
End AxD's Mission is to be a catalyst for research and development of a treatment, and eventual cure, of Alexander Disease, and to help those with this disease get the care they need.
Our current board is comprised of parents who's children have been diagnosed with Alexander Disease. Alexander Disease (AxD) is a very rare, usually fatal, neurological disorder that can cause a range of motor and cognitive difficulties including seizures; difficulty swallowing, feeding, and vomiting; and severely impaired balance and coordination. AxD is caused by the presence of abnormal forms of the protein “GFAP”, which leads to the formation of characteristic structures known as “Rosenthal fibers” in the central nervous system. While often detected in infancy and early childhood, recent improvements in diagnosis and classification have shown that AxD occurs with similar frequency across all ages.
End AxD's Mission is to be a catalyst for research and development of a treatment, and eventual cure, of Alexander Disease, and to help those with this disease get the care they need.