Stepping up to bat against ALS

Relative moved to fight Lou Gehrig’s disease

BY PAUL HERRIDGE
The Southern Gazette

A Burin resident with a connection to Amyotrophic lateral sclerosis (ALS), known to some as Lou Gehrig’s disease, is putting on her walking shoes again this year. She’s encouraging others to do the same.

Mary Lundrigan’s brother-in-law, Don Penney, was diagnosed with ALS in early 2005 and she participated in her first ‘Walk for ALS’ later the same year.

Last summer, she decided the event, which is sponsored annually by the ALS Society of Newfoundland and Labrador, should have a presence on the Burin Peninsula. So she organized a fundraising walk in her hometown as a means to raise awareness about the disease.

The results were quite good.

When walkers lace up their shoes and leave the Royal Canadian Legion, Branch 29 in Burin for a walk around the area June 10, she hopes to have done even better this time around.

“We raised close to $2,000 last year. I’d be very pleased if it doubled, but I’m hoping to raise more than that.”

DEVASTATING NEWS

Mr. Penney spent a year or so going back and forth to the doctor in an attempt to determine the cause of a slight tremor in his left hand, before he was finally diagnosed with ALS.

Mrs. Lundrigan acknowledged the whole family was taken aback and shocked by the news. Coming from a small family, she and her two sisters were close and Don’s diagnosis devastated everyone.

ALS has no cure and the illness is terminal. Some live two years, some five, and occasionally some a little longer.

Mrs. Lundrigan explained the disease affects people differently – it can progress fast in some and slow in others.

“As luck should have it, if you want to call it lucky, my brother-in-law seems to have the slow progression type.”

SUPPORT

Cheryl Power is the executive director of the ALS Society of Newfoundland and Labrador, which started as a small support group 18 years ago.

Like Mrs. Lundrigan, she had never heard of the illness until her father was diagnosed with the disease. She called the national branch, which in turn put her in touch with the family in Corner Brook, who had started the group.

Through the ‘Walk for ALS’ and other fundraised income, the organization is able to provide electric beds, wheelchairs, breathing aides and other necessary equipment free of charge for clients.

The first ‘Walk’ four years ago brought in about $40,000. Last year, approximately $72,000 was raised. Forty per cent of the money donated goes to national research while the remainder stays in the province.

“It’s grown year after year.”

Mrs. Power indicated there are 35 people with the illness in this province currently registered with the ALS Society.

“The thing is as one is diagnosed, another dies, which is very unfortunate.Last year alone in 2006 we have 13 registered clients, who passed away, and there are some out there that are not registered with us. So we don’t have the stats on that.”

So far there have been 12 new registrations this year.

“It’s more common than people think.”

There are presently nine ‘Walks for ALS’, which take place throughout the province.

Mrs. Lundrigan indicated she hopes her efforts can help find a cure, and lend a hand to families and patients who face ALS.

She also aspires to also raise awareness of the disease among the public.

“I’m trying to bring more awareness and you’d be surprised the number of people who have never heard tell of ALS.

“I guess you could say in a way it’s my way of dealing with it.”

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