Raising Awareness About Rare Disease that Resembles Muscular and Nervous Disorders

Sep 30, 2013

In honor of International Ataxia Awareness Day, a Central New York support group gathered at the North Syracuse Community Center to spread the word of this disease.

Mary Jane Damiano has suffered with Ataxia for 45 years and wants to raise awareness about the condition
Mary Jane Damiano has suffered with Ataxia for 45 years and wants to raise awareness about the condition
Credit Chenelle Terry/WAER News

“It can affect anybody any time any stage in their life”

It’s called Ataxia, a disease that mainly affects the nervous system and one that many people have never heard of. That’s why school teacher Ed Lucke and other Central New Yorkers make a point to come together to celebrate International Ataxia Awareness Day each September

 

“It’s a disease that’s not very well known about until you start to exhibit certain signs like a type of dementia but it’s not the same type as Alzheimer’s. It’s hard to pinpoint because it has so many different phases, there are so many different types of Ataxia”

One type, Friedrich’s Ataxia has greatly impacted Marnie Bean for the past 15 years,

Marnie Bean attended this weekend's Ataxia awareness day.
Marnie Bean attended this weekend's Ataxia awareness day.
Credit Chenelle Terry/WAER News

“I can’t get to the bathroom, I can’t feed myself, I can’t walk. It’s hard to talk. It affects every part of my life.

Ataxia can mean simply poor coordination, but refers to a degeneration of the nervous system.  The National Ataxia Foundation lists a number of possible causes for the condition:

  • Head trauma
  • Stroke
  • Brain hemorrhage
  • Brain tumor
  • Structural disorders - the cerebellum was not formed properly before birth
  • Severe viral infection
  • Exposure to certain drugs or toxins (alcohol, seizure medicine)
  • Cardiac or respiratory arrest

Central New York Ataxia Support Group Chair Mary Jane Damiano has dealt with the disease for the past 45 years. For her, this day of awareness means so much.

“Better than Christmas, better than birthdays. Making people aware makes me happy."

The Muscular Dystrophy Association provides services to the Central and Northern New York area. Visit mda.org to learn more and get connected.