Shelagh Mikulak is determined to stay on her feet as long as she can, although most of her time is spent in a wheelchair these days. Shelagh has ALS, also known as Lou Gehrig's disease, a progressive and incurable disease.

"I will lose all use of all my muscles but my brain will still be intact. At some point, I will not be able to move to talk but I will be able to think," says Mikulak. "The final stage is I will die, somewhere in the next few years."

It's a grim outlook, but Shelagh is living life to the fullest. She has signed up on the national registry to help researchers find some answers.

"I feel I contributed to the registry and left a piece of my legacy. If someone in the future could get treatment I would be happy with that and my family would be happy knowing what I'm going through isn't for nothing."

The national registry focuses on 40 diseases to determine how muscles and nerves work.

Research is challenging because patients are scattered across the country.

For more information on the registry, visit the Canadian Neuromuscular Disease Registry.

On June 12th, the 15th annual Betty's Run for ALS will be held at North Glenmore Park to raise money for ALS awareness, equipment and research.