Danylle Kern refuses to get tested.

To Kern, a senior interior design major, knowing that she has Ataxia won’t make a difference because the disease has no treatment or cure.

But maybe she can make a difference anyway.

For National Ataxia Awareness Day, Kern and her sorority, Pi Beta Phi, spread local knowledge about the neurological degenerative disease that can slow and eventually stop motor function, sight and speech.

She and her sisters were selling T-shirts and gave out information to students on the Hill Thursday. Through her Facebook group and friends on campus, Kern has already sold more $1,700 worth of T-shirts for the cause.

Kern watched the disease eat away at almost all of her mother’s family, and both she and her older sister, Aimee, have a 50 percent chance of testing positive.

‘I think neither of us really want to do it because there’s no treatment, there’s nothing you can do about it, so what’s the point in knowing?’ said Aimee Kern, a graduate student at the State University of New York at Albany.

Approximately 150,000 Americans suffer from the rare disease, said Michael Parent, executive director of the National Ataxia Foundation in Minneapolis. Parent recognizes the difficulties in facing Ataxia, noting that getting tested when one or both parents are positive isn’t always an appealing choice.

‘Gene testing is a personal decision between that individual and the family,’ Parent said. ‘Many people get tested, others, at this point, with no treatment or cure, do not want to know.’

Kern’s family has spinocerebellar ataxia number 7 (SCA7), a continually advancing disease that never stops destroying the part of the brain that controls motor ability, speech and sight.

SCA7 is a dominant genetic gene and has been passed from parent-to-child for more than four generations in Kern’s family.

Danylle describes the first stages of Ataxia she has observed in her family as similar to being drunk: slurred speech and stumbling. After time passes and the disease continues to overwhelm the brain, like in the case of her uncle, people suffering from Ataxia become wheel-chair bound and lose their sight altogether.

‘Our family is starting to feel the results and stress of the disease,’ said Cindy Kern, Danylle’s mother. ‘My brother is young; he just turned 40, and already he can’t work and can’t do the things he wants to do.’

Danylle’s mother was diagnosed in her mid 30s. Once Cindy began to lose her balance walking, she knew that something wasn’t right and decided to get tested. Now 47 years old, the effects of the disease have surfaced, slowing her speech, weakening her vision and forcing her to walk with a cane.

‘It’s hard to go home and find out that your mom can’t see as far as she used to,’ Danylle said.

Cindy feels no pain, but said she has been slowed down considerably in her day-to-day life.

‘In all its negative things, I see positive effects, also,’ she said. ‘It has slowed me down, but I think in slowing me down, because I was a very active person, it’s opened some other doors for me to look through.’

Unfortunately, funding for Ataxia research is limited, so medical progress is stunted. Since the disease is so rare, research for treatment gets less attention than it needs, Parent said.

As a newly recognized disease, Ataxia’s struggle for awareness and funds has been an uphill battle. When scientists discovered it in 1993, they called it Ataxia, from the Greek word meaning ‘lack of order.’

In an age of rampant diseases and causes, advocates of the rare disease promote awareness across the country on the weekend of Sept. 25.

‘We have a lot of different chapters and support groups across the U.S. who are doing events this weekend,’ Parent said.

Danylle began her project as a birthday present to her mother. She and her sister, Aimee, thought their mother would like the T-shirts Danylle designed as a family gift.

Aimee sent informative e-mails to all of her class members and encouraged her tennis team to help with the National Ataxia Awareness Day, while Danylle came back to Syracuse and sold her T-shirts to raise money which she plans to donate to the Philadelphia research clinic.

‘We’re trying to get people to understand the disease,’ Danylle said. ‘I think the college atmosphere helps a lot with getting people aware.’

Kern sold more than 300 T-shirts, and her Facebook group has gained more than 350 people in the last few weeks.

‘I think because of how great the results were this year, we’ll definitely do it again next year,’ Aimee said. ‘It’s hard to raise money because it’s so rare, and there are so many more diseases that cause death, but there’s obviously more that can be done.’

Over the last few weeks, Aimee has reconsidered getting tested, but said her sister is still afraid knowing what might come. Aimee chose to get tested because she is considering marriage and children, and she wants to know what to expect in the next few years.

Aimee feels that her sister, on the other hand, does not have the kind of support that she has, and that fear of being away from her family is strongly influencing her feelings about knowing.

‘I think she doesn’t want to go through it alone,’ Aimee said. ‘She has a couple good friends (at Syracuse), but most of them who have seen her family and know what it’s like are at home.’

Elsa Buss, a senior policy studies and public relations major and close friend of Danylle, finds her friend’s story inspiring and is helping with the awareness effort as much as she can.

‘I couldn’t imagine being in her position and having to face that at the age we are now with its implications behind dealing with that for the rest of your life,’ Buss said. ‘But Danylle is brave, and she has her sister who is in the same position, so she has a really great support system in her family.’

[email protected]

Published on September 25, 2008 at 12:00 pm