Cerebellar Ataxia is rare neurological disorder of the cerebellum; it's a serious, debilitating progressive disease that over time leaves one completely dependent on others' assistance.
Dr. Sarah Ying, a trained neurologist working at Johns Hopkins Hospital, studies and works with patients that have with cerebellar Ataxia.
"I think right now Ataxia is the last great frontier of neurology in America," Ying said. "Everyone has heard about Multiple Sclerosis and strokes, but most people have not heard of what cerebellar Ataxia is."
The symptoms are often likened to the effects of heavy alcohol intoxication. Individuals suffer from slurred, incomprehensible speech and impaired motor skills such as uncoordinated, clumsy walking patterns.
"So you can imagine, if you're drunk, those effects will last a night and wear off in the morning. But for people with cerebellar Ataxia, this is a permanent degeneration that does not go away. And in most cases, their mind remains fully in tact, so the individual is completely aware of what is happening to them," Ying said.
Because so few people know what Ataxia is, these sick individuals are often assumed to be simply hung-over; thus, they rarely receive the sympathy and understanding they deserve.
"A lot of individuals have started wearing shirts that say, 'I'm not drunk, I have Ataxia'," Ying said. "It's hard because people don't look so kindly on other people who are stumbling around at 10 in the morning."
Making a difference, Ying is now faculty advisor for Ataxia Ambassadors. The Ataxia Ambassadors at Hopkins is a student group that sets out to spread awareness of the severe disorder.
"Raising awareness is really my favorite aspect of being in the club. It's a really terrible disease and no one knows anything about it," sophomore Megan Crants, treasurer of Ataxia Ambassadors, said.
"One of my friends from high school had it but no one really understood what it was, and we all felt bad because we didn't know what to do. So this is a way for me to do my part for him."
Founded four years ago, the club has approximately 30 members who bring a strong presence to campus, especially at their annual Ataxia Picnic.
The Ataxia Ambassador's biggest day of action on campus comes during the fall bringing together students, doctors, researchers and patients from Maryland and surrounding states that suffer from Ataxia. The day is intended to be a happy, social day of fun and raising awareness.
Many of the patients that come are members of the Chesapeake Chapter of the National Ataxia Foundation, a group that has been around since 1982.
"We also advertise the picnic at the clinic and the Hospital," Ying said.
The opportunity for students and others to interact with Ataxia patients in an unparallelled eye-opening experience.
"The Ataxia Picnic is my favorite part of being in the club because all the patients get to come together and share their stories," sophomore Erin Vigil said.
Along with raising awareness, the event is a strong fundraiser. All the money goes to support families and research involved with Ataxia.
"This year we raised almost $600 for the National Ataxia Foundation, and then some donors matched that amount," Crants said.
Different student groups joined with the Ataxia Ambassadors to help the Ataxia Picnic. Performances were given by Neuronal Jazz Quartet, the JHU student choir, a Capella groups Adoremus and the Octopodes and the Hopkins BBoys. Additionally, the Hopkins Association for Stroke Awareness (HASA) was present to give free blood pressure screenings.
While the fall is marked by a large scale-campus social event and fundraiser, the Ataxia Ambassadors also devote themselves to serious education and awareness year-round.
"There is an Ataxia Clinic at Hopkins Hospital and so you can go in and observe the patients, help them with physical therapy and help them walk," Crants said.
One day in the spring the club attends a medical meeting Montgomery College. Members get to hear from patients, researchers, doctors, occupational therapists, physical therapists and speech therapists. It is an interactive event where there is a vibrant discussion between the audience and the speakers. This has helped students learn more about what it is like living day to day with the disease.
"There's the medical meeting in the spring and the Ataxia Picnic in the Fall. The spring one is more heavy and serious with the doctors talking to you, and then the Picnic was born more out of a happier, social event," Ying said.
With so much knowledge and cutting edge research surrounding Hopkins students in Baltimore, groups like Ataxia Ambassadors exist to remind the community that there are still problems left unsolved, and diseases still not cured.
