The End AxD Mission
End AxD is fiercely committed to serving the Alexander Disease community by accelerating research into treatments and a cure, advocating for, supporting, and empowering patients and families.
What is 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.
Why End AxD?
Because Alexander Disease is very rare, critical resources are sparse and scattered across the patient population. Not only does this fragmentation complicate efforts of medical professionals, it also leaves families to endure the emotional devastation of an AxD "diagnostic odyssey." These families often understandably build personal support networks in an effort to provide the best possible chance to win the battle against this complex disease.
End AxD endeavors to bring these individual efforts under a single organizational umbrella. Doing so will facilitate more accurate diagnosis and effective care for sufferers of Alexander Disease. Furthermore, by assembling a centralized registry of AxD patients, we can provide more data for researchers, leading as quickly as possible to a cure.
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Support our mission by contributing today.
Learn more about the high impact research we have supported.
You can also send a cheque to End Alexander Disease Inc to P.O. Box 827, Ooltewah, TN 37363. Every little helps.
