Spinocerebellar ataxia, also known as SCA, is a progressive, degenerative genetic disease that affects the cerebellum, causing loss of movement control in patients. An organization committed to helping those with SCA has founded a new theater troupe to raise awareness by touring schools across the country. It has also launched a new exhibition to showcase the independent works of SCA patients.
This is a work of art done by Ms. Tan. She has a rare genetic disease known as spinocerebellar ataxia. The disease can manifest itself in uncontrollable movements such as an uncoordinated gait or involuntary eye movements, owing to degenerative changes in cerebellum. Hand-eye coordination and speech may also be affected but that has not stopped Ms. Tan from pursuing her passion for art.
Tan Yueh-hui
Taiwan Spinocerebellar Ataxia Association
My mother became ill at the age of 50. At the time she didn''t know the name of the disease, and her condition quickly transitioned from mild to moderate. Moderate means that she had to rely on a wheelchair and had some difficulty swallowing. Because we got to know about the Taiwan Spinocerebellar Ataxia Association, so now my mom has participated in this course for 20 years. She''s been in a wheelchair for 20 years, but can stand up now. She''s kept a positive attitude. I am so happy to see my mother''s work displayed.
This is an art exhibition held by the Taiwan Spinocerebellar Ataxia Association. Apart from showcasing the creations of patients, there are also photographs of them with their family members. Captions under the photographs tell a bit about each family and what they have overcome.
Tan Yueh-hui
Taiwan Spinocerebellar Ataxia Association
This picture is of a patient from Taichung whose family line has the spinocerebellar ataxia altered gene. When I see him throwing a ball, I get emotional.
To facilitate the public''s understanding of spinocerebellar ataxia, the Taiwan Spinocerebllar Ataxia Association has also collaborated with the Rotary club for the setting up of a new performance troupe. The troupe plans to raise awareness about the disease and build up compassion amongst peers for the prevention of bullying by touring schools throughout Taiwan.
Chen Hsin-lung
Rotary District 3523 president
Basically, many people in the public do not know much about spinocerebellar ataxia. We hope that through these performances, the general public can better understand the symptoms of spinocerebellar ataxia and improve the future situation. We''ve used empathy devices so that people can better appreciate how the disease affects coordinated movements and speech. In this way they can get a better grasp of what it''s like to live with spinocerebellar ataxia, to experience the physical and mental state of people with the disease.
Organizers hope to continue raising awareness of the disease through art and drama. The exhibition will be held at Taipei Wanhua''s Bopiliao Historic Block till Oct. 22.