ALS Canada goes to Parliament Hill

The following article was supplied by the ALS Society of Canada and is reprinted in full, with their kind permission.

On October 7, 2009, ALS Society of Canada board members, advocacy committee members, researchers and volunteers (including those from the ALS Ontario Champlain Regional Office in Ottawa) and staff, headed to Parliament Hill to request that the federal government increase its annual funding of the Canadian Institutes of Health Research (CIHR) budget by $700 million and improve the current Compassionate Care Benefits Program.   

Currently, the CIHR budget is $978.8 million, which is less than one per cent of total health expenditures in Canada (total health expenditures in Canada are currently $170 billion). A $700 million increase to the current CIHR budget, as requested by ALS Canada, would bring CIHR’s budget to $1.7 billion, making it one per cent of total health spending in Canada. This percentage corresponds with the recommendation of The Health of Canadians – The Federal Role. Final Report on the State of the Health Care System in Canada, October 2002. The Standing Senate Committee on Social Affairs, Science and Technology produced the report and the committee was chaired by Senator Michael Kirby and the Deputy Chair was Senator Marjory LeBreton. 

Throughout the day, ALS representatives met with numerous MPs and bureaucrats from each of the major political parties to discuss the importance of funding for research and more flexibility and financial support for caregivers. There was a high degree of awareness about ALS as well-respected Parliament Hill staffer, Richard Wackid, succumbed to the disease the weekend before. 

Barrie, Ontario (Conservative) MP Patrick Brown delivered a statement in the House of Commons that outlined the impacts of ALS: “This is a devastating neurological disease. Currently, there are approximately 2,500 to 3,000 people in Canada living with ALS and 80 per cent of the people diagnosed with ALS tragically die within two to five years of diagnosis.” Brown also invited House members to the ALS Society of Canada reception where they could learn more about and support what he called a “…very worthy cause.” 

One of the day’s highlights included a photo opportunity with Prime Minister Stephen Harper. ALS Canada President & CEO, David Cameron, ALS staff and researchers and Barrie, Ontario resident, Derek Walton, who is living with the disease, had a brief meeting with Prime Minister Harper.

Cameron discussed the importance of research for finding a cure for this devastating disease and recognized the government’s support of the Neurological Health Charities Canada (NHCC). The NHCC is a collective of organization that represents people with chronic, often progressive neurological and/or neuromuscular diseases, disorders, conditions and injuries in Canada. The Conservative Party of Canada has committed to invest $15 million in a four-year population-based study of neurological diseases, conditions, disorders and injuries in Canada. 

The day ended with a reception hosted by MPs David Tilson, Dufferin-Caledon (Conservative) and the Honourable Bryon Wilfert, Richmond Hill (Liberal). 

The evening included talks from ALS researcher Jean-Pierre Julien, PhD, and Walton, who despite being in a wheelchair and living with the ALS for seven years, has raised more than $100,000 for ALS research through various events such as his recent sky dive.

“The day went extremely well,” said Cameron. “We were able to stress the importance of increased funding for researchers in order to find suitable treatments and ultimately a cure for ALS. Any advance in ALS research will also advance research in other neurodegenerative diseases,” he said.

Left to Right: Barrie MP Patrick Brown, Lanny McInnes (chair of ALS Canada Advocacy Committee), Mark Napper (caregiver to Derek Walton), Prime Minister of Canada Stephen Harper, Felicia Valo – her husband Sidney Valo died of ALS last December and was an ALS Canada board member, Director of Communications ALS Society of Canada Bobbi Greenberg, ALS researcher Jean-Pierre Julien and David Cameron President & CEO ALS Canada (Front row: Derek Walton – living with ALS)

                    

Technorati Tags: ALS Canada, Health care funding, Lou Gehrig's Disease, Public relations, Stephen Harper

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Tags: ALS Canada, Health care funding, Lou Gehrig's Disease, Public relations, Stephen Harper

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