November 21, 2018 6:48 pm

ALS society lobbying New Brunswick and Nova Scotia governments for funding

Wed, Nov 21: The ALS Society of New Brunswick and Nova Scotia has been operating for forty years without any government support. But as Jeremy Keefe reports, that changed on Wednesday. The organization has begun lobbying governments in both provinces in hopes of securing much needed funding to help those living with the incurable disease.

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The ALS Society of New Brunswick and Nova Scotia say they require funding from the provincial government to continue assisting those living with the incurable disease and their families to live normal, high-quality lives.

On Wednesday morning at the Nova Scotia Legislature, the organization called on the province to provide $140,000 in annual funding which they say would cover about 25 per cent of their operating costs.

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“We’ve been doing this for 40 years in Nova Scotia without any government funding,” explained president and CEO Kimberly Carter.

“As a small non-profit organization not funded by any level of government, we don’t have the resources to make up for the total inequity of care.”

READ MORE: ‘People don’t live very long after being diagnosed’: ALS Society of Manitoba

Through the society, families have access to a variety of support, from information to borrowing equipment and more.

But they say a new way of providing care to those dealing with the debilitating disease is urgently required in our region.

“People with ALS are dealing with crisis situations because they are not receiving the adequate health, home and palliative and long-term care they require to manage this extremely devastating disease,” Carter said.

WATCH: Groundbreaking treatment for ALS

The disease steals the ability to walk, talk and eventually breathe, from those who are diagnosed with it.

Deana Davis’ husband was one of those who lived with ALS until it took his life about four years after diagnosis.

She said even with help from the society and home care, becoming the primary caregiver took a toll on her and their finances.

“During the four years of Darrel’s living with the disease, we spent approximately $170,000,” she explained. “There is certainly a need for a change in the way that we deal with the disease and the way our governments face the disease.”

READ MORE: ALS drug approved by Health Canada could slow down progression of fatal disease

William Duff, 32, lives with ALS and has become wheelchair-bound due to the disease’s progression.

As a former military member, he has access to benefits that he knows most people don’t: physiotherapy, home care, equipment and more.

They are services he’d like to see provided to everyone living with the disease.

“If I need something, they’re going to step up and help me get that in whatever way possible,” he said.

Nova Scotia’s Department of Health didn’t respond to questions about whether funding for the ALS Society would be considered in their next budget.

Follow @Jeremy_Keefe

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