ALS Societies mark ALS Awareness Month in June

ALS Societies mark ALS Awareness Month in June

TORONTO, ON (June 1, 2017) – The first day of June marks the beginning of ALS Awareness Month in Canada. And while more Canadians may be familiar with ALS as a result of the Ice Bucket Challenge in 2014, there remains much more work to do to help people understand the devastating impact of the disease, its terminal outcome, and the great need for better funding. ALS Societies across Canada are 100% funded by donors, whose generosity is essential in funding research to make ALS a treatable, not terminal disease and in providing support to people and families living with the disease.

Receiving an ALS diagnosis is overwhelming, and living with the disease is not an easy journey. ALS, which stands for amyotrophic lateral sclerosis, is also known as Lou Gehrig’s disease and Motor Neuron Disease. The 1,000 Canadians who are diagnosed with ALS each year face progressive paralysis as a result of the brain no longer being able to communicate with the muscles of the body. Over time, as the muscles break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. There are approximately 3,000 Canadians living with ALS at any time. There is no cure for ALS, it can affect anyone, and 80 per cent of people diagnosed die within two to five years – though research advances are providing an increasing source of hope.

“There is great reason to be hopeful about the promise of effective treatments for ALS, and the research community is telling us they are a matter of ‘when,’ not ‘if’,” says Tammy Moore, CEO of the ALS Society of Canada. “We know this day cannot come soon enough for people and families living with ALS, which is why ALS Societies across Canada continue to invest in ALS research based on best practices in research funding with the greatest potential to make a difference – while also supporting the needs of people and families living with ALS today.”

In 2016, approximately $6.2 million was invested in 20 different ALS research grants and awards funded through the ALS Canada Research Program. Of this amount, $3.5 million was contributed by generous donors and partnerships with provincial ALS societies. An additional $2.7 million was matched by the Brain Canada Foundation through the Canada Brain Research Fund (with the financial support of Health Canada) as a result of their partnership with ALS Canada following the Ice Bucket Challenge.

With volunteer-led WALK for ALS events taking place in more than 80 communities across Canada in the coming months, the country’s ALS Societies are hopeful that donor generosity will result in a fundraising total close to $4 million. Of the net WALK proceeds, 60 per cent are used to provide support to people and families living with ALS while 40% are contributed to the ALS Canada Research Program, which receives additional funding support throughout the year thanks to donor generosity.

To acknowledge ALS Awareness Month, yesterday MPs David Tilson and Judy Sgro made a Member’s Statement in the House of Commons. Mr. Tilson, whose father died of ALS, is a member of the all-party ALS Caucus that was formed in late 2016. Chaired by MP Francis Drouin, the ALS Caucus is focused on opportunities related to ALS research and care. Earlier this year, a private member’s motion calling on the federal government to play a leadership role in supporting ALS research and awareness was introduced by MP Judy Sgro, who is also a member of the ALS Caucus, and approved unanimously in the House of Commons. Canadians can get involved in ALS Awareness Month by donating to an ALS Society across Canada, by registering for a WALK for ALS at walkforals.ca and by continuing to raise awareness.

About ALS Societies across Canada
ALS Societies across Canada provide services and support to people and families touched by ALS in their provinces and contribute to the ALS Canada Research Program. The ALS Canada Research Program supports the Canadian ALS research community and uses best practices in research funding to award grants with the greatest potential to make ALS a treatable, not terminal disease. ALS Societies advocate federally, provincially and locally on behalf of people and families living with ALS for better government support and access within the healthcare system. ALS Societies survive on donations and funds raised throughout the year.

For more information, please contact:
ALS Canada Marketing and Communications
media@als.ca; 416-497-2267 ext. 234

Walk For ALS 2017 | June 4-11

Walk for ALS – Coming Soon!

In 1988, family and friends of people living with ALS formed the ALS Society of NL. Each year the Society raises funds to provide services and support for people and their families living with ALS in our province.  Volunteers across Newfoundland and Labrador have come together to organize walks and provide you with the opportunity to take part and get together with others who have been affected by ALS.  The 2016 ALS walks helped raise over $125,000.  Of this money 40% is directed to ALS Canada’s National Research Fund and 60% stays here in the province enabling us to help our families afflicted with this devastating disease. A BIG thank you to our Walk Co-ordinators, our ALS families & friends.

*For complete individual community 2017 Walk for ALS details see link below:
http://walkforals.ca/find-a-walk/newfoundland/

*To quickly and easily make an online donation click here
Thanks to everyone for their support! 🙂

 

Thank You to Our Provincial Sponsor:

 

Why do some people develop ALS while others do not? Canada joins international research partnership to find answers and better target the disease

ALS Society of Canada to spearhead Canada’s participation in Project MinE, which will study the DNA profiles of 22,500 people to identify genetic patterns specific to people with ALS

TORONTO, January 10, 2017 – Canada has become the 17th country to join an international research partnership that is working to determine why some people develop ALS while others do not, with numerous Canadian ALS researchers stepping up in a cross-country collaboration that is among the first of its kind in the country.

The ALS Society of Canada (ALS Canada), in partnership with provincial ALS Societies across the country, is spearheading efforts for the Canadian component of Project MinE, a multi-national initiative that gained momentum following the Ice Bucket Challenge. Project MinE will map the full DNA profiles of 15,000 people with ALS and 7,500 control subjects, establishing a global resource of human data that will enable scientists worldwide to better target the disease by understanding the genetic signature that leads someone to develop ALS.

By accumulating such a large amount of data that no one country could achieve alone, it is expected that Project MinE could identify new genetic causes of the disease. The discoveries gained through Project MinE have the potential to significantly accelerate our ability to advance treatment possibilities that could slow down or even stop ALS. Canada’s goal is to contribute up to 1,000 DNA profiles to the international effort.

“What’s special and powerful about Project MinE is that it brings together different members of the ALS community – researchers, clinicians, and people and families affected by ALS – who are collaborating within Canada as well as internationally to better understand how ALS can be treated effectively,” said Tammy Moore, CEO of ALS Canada.  “We see Project MinE as a Canadian and global legacy that will help to develop effective treatments for ALS for the first time ever.”

ALS, or amyotrophic lateral sclerosis, is a disease that gradually paralyzes the body, leaving people without the ability to move, talk, swallow and eventually breathe. Eighty per cent of people die within two to five years of being diagnosed with ALS because the disease has no effective treatment or cure. However, ALS research has advanced to a point that many ALS research experts believe effective treatments are now a matter of ‘when’ not ‘if,’ and that research discovery is limited only by the amount of funding available to pursue it.

The ALS Society of Canada is directing an initial $150,000 to Project MinE and is seeking funding from the federal government to support Canada’s ongoing participation in the initiative, building on the support of the all-party ALS Parliamentary Caucus created in 2015 to support the call for federal research dollars.  Federal funding for Project MinE would allow for the stored DNA profiles of people with ALS to be contributed to the project, and it would enable all Canadians living with ALS to contribute a DNA sample to Project MinE if they so choose.

“Project MinE fills me with great hope as it will make ALS easier to study and has great potential to lead to effective treatments,” said Chris McCauley, who was diagnosed with ALS in 2015 and is ALS Canada’s ambassador for Project MinE. “To me, Project MinE is a great example of using the expertise and technology at our disposal as a society to try to solve a problem and alleviate suffering. I think of others who will come after me and like me, lose the bloom of their health so insidiously. Project MinE could help to make things better for them.”

Research expertise for Canada’s Project MinE effort is being provided by four of the country’s leading ALS geneticists in Québec City, Vancouver, Toronto and Montréal:

  • Dr. Nicolas Dupré, Neurologist; Assistant Professor, Faculty of Medicine, Université Laval; Clinician-Scientist, Axe Neurosciences, CHU de Québec – Université Laval, Quebec City
  • Dr. Ian Mackenzie, Professor at the University of British Columbia; Staff Neuropathologist at Vancouver Coastal Health, and a Consultant Neuropathologist, BC Cancer Agency, Vancouver
  • Dr. Ekaterina Rogaeva, Chair in Research on Dementia with Lewy Bodies at Tanz Centre for Research in Neurodegenerative Disease, and Professor, Department of Neurology, Faculty of Medicine, University of Toronto, Department of Medicine
  • Dr. Guy Rouleau, ​Director of the Montréal Neurological Institute and Hospital and Department of Neurology and Neurosurgery, McGill University, Montréal

Each of the participating researchers has led or been part of international consortia that have resulted in some of the most important genetic discoveries in the field. They also represent a geographical balance that would provide a collaborative set of Canadian samples representative of ALS cases across the country. Project MinE represents their first-ever cross-country collaboration.

“In the vast majority of ALS cases, the precise cause of the disease is unknown – although research is increasingly demonstrating that genetics play a big role,” said Dr. Guy Rouleau, Director of the Montréal Neurological Institute and Hospital at McGill University in Montréal. “Project MinE is an unprecedented opportunity for the global ALS research community to answer critical questions about the genetic signature of ALS and the biological changes that can trigger its development – in turn making it possible to develop effective treatments.”

Other collaborators in Canada’s Project MinE effort are the ALS clinics who will collect and in some cases store the blood samples being used for the initiative. Potential ALS clinic partners that have been identified to date are:

  • the ALS Clinic at the CHU de Québec
  • the GF Strong Rehabilitation Centre’s ALS Centre in Vancouver
  • the Sunnybrook Health Sciences Centre ALS Clinic in Toronto
  • the ALS Program at the Montreal Neurological Institute and Hospital

Approximately 1,000 Canadians are diagnosed with ALS each year. At any time, there are approximately 2,500 to 3,000 people living with the disease in Canada, and the average cost to a family is between $150,000 and $250,000. Every day, two to three Canadians die of ALS.

About Canada’s ALS Societies

ALS Societies across Canada fundraise on a regional basis to provide services and support to people and families living with ALS and to contribute to the funding of the ALS Canada Research Program. The ALS Canada Research Program funds peer-reviewed research grants and fosters collaboration amongst Canadian researchers, helping to nurture new ideas and build capacity. ALS Societies advocate federally, provincially and locally on behalf of people and families living with ALS for better government support and access within the healthcare system.

About Project MinE

More than 200,000 people worldwide are living with Amyotrophic Lateral Sclerosis (ALS), otherwise known as Motor Neuron Disease (MND) or Lou Gehrig’s disease. Founded in 2013 by Robbert Jan Stuit and Bernard Muller, two entrepreneurs living with ALS, Project MinE is a large-scale research initiative devoted to discovering the genetic cause of the disease. It will map the full DNA profiles of at least 15,000 people with ALS and compare them to DNA profiles of 7,500 control subjects to uncover associations between specific variations in genes and ALS. The ultimate goal is to identify genes that are associated with ALS. The function of these genes may lead to disease pathways for which treatment can be developed. This type of large-scale genetic research into the origins of ALS is unprecedented. www.projectmine.com