ALS News

PowerSource 2014: Making a Difference for Families and Friends Living with ALS

In our Spring Newsletter, we share your stories, update you on ALS research and tell you about our upcoming fundraising events. 

Thank you to everyone who submitted their stories and helped put the newsletter together.

The ALS Canada Team.

 

April 6-12 is National Volunteer Week in Canada, and ALS Canada would like to both congratulate and celebrate with our volunteers. 

We cannot thank you enough for:

Your Valuable Time, Your Advocacy, Your Smiles, Your Enthusiasm, Enduring your Paper Cuts, Your Positive Attitude, Your Effort, Your Governance, Your Listening, Your Ideas, Your Dedication, Your Fearlessness, Your Fundraising, Your Wisdom, Your Caring, Your Patience, Delivering the message about ALS and Your Endurance

Volunteer Profile

Melanie York: Changing Perceptions and Breaking down Barriers

Melanie York is an advocate. For the past four years, she has been a voice of reckon for ALS Canada voluntarily spearheading active roles as a board member, contributor to the marketing communications working group, member of the ALS Canada Scientific Medical Advisory Council and as the brave chairperson to the ALS support groups at Sunnybrook hospital. 

The 2014 Bombardier Plane Pull for ALS Canada is a show of human strength – the physical strength of the participants and the mental and spiritual strength of the individuals who fight every day with ALS, also known as Lou Gehrig’s disease. Don’t miss out on this unique fundraising event!

When a family member was diagnosed with ALS, Randy Carlyle joined forces with ALS Canada to raise awareness and funds for education, equipment and research to find a cure. As the coach of the Toronto Maple Leafs, Randy knows the importance of teamwork. A community that works collaboratively and is united towards achieving one goal makes a winning combination to fight against ALS.

An exclusive look at ALS Canada's PSA with Toronto Maple Leafs Coach Randy Carlyle. 

ALS Canada’s annual WALK for ALS is our largest event that happens because of the strength, determination, courage and perseverance of communities across Canada. The WALKs are our platform to raise awareness with a unified vision: to support families, friends and neighbours living with ALS.

When her grandfather, Doug Clark, was diagnosed with ALS, Raegan Clark was only ten years old and she didn’t know yet how drastically it would change her reality and aspirations.

Starting in February 2013, a new initiative of gathering monthly feedback on our equipment program was implemented.

Charles Krieger

Often we think of disease treatments as drugs that are swallowed or injected to make us better, but what if there was a therapy where we simply boost our own bodies to help internally defend us against illness?

The third annual Bombardier Plane Pull held on May 26, 2013 was an amazing show of human strength, showcasing the physical strength of the participants, and symbolically representing the mental and spiritual strength of individuals with ALS.

Study shows caring for ALS patients costs their families over $150,000

OTTAWA, ON, November 18, 2013 – ALS Canada representatives will meet Parliamentarians and officials in Ottawa tomorrow to press for increased benefits to Amyotrophic Lateral Sclerosis (ALS) caregivers. Alleviating the exorbitant costs borne by Canadian families caring for a loved one has been identified as a key priority by ALS Canada. A new study, which shows that the total cost of caring for an ALS patient averages well over $150,000, reinforces the need for immediate action.

ALS Canada would like to convey our warmest sympathy on the passing of one of our founders and one of the most esteemed ALS clinicians and researchers in history, Dr. Arthur James Hudson, who passed away on September 8, 2013.

2012 was a year of dynamic, positive change delivering a unified organization. We firmly built the foundation for a brighter future to serve clients with ALS in Ontario and across Canada. The success of the new model is clearly evident as you read throughout the annual report.

A lot has been discovered in recent years linking ALS to abnormalities in regulation of RNA (geneticinformation that can move around inside cells).

In late 2011, two international consortia identified that mutations in a gene called C9ORF72 causes a higher percentage of familial and sporadic ALS than any other previously discovered.

ALS is a disease that can affect anyone, at any age and of any ethnicity. While a great deal has been learned about North American, European and Japanese populations with ALS, there are other countries that have not been examined as closely using current techniques.

One of the newest animal models to study ALS is the zebrafish (D. rerio). These fish exhibit several indications of disease including impaired swimming due to paralysis from gene mutations that cause ALS in humans.

The work of Dr. Mazen Hamadeh’s lab at York University has been studying the effects of vitamin D(3) on ALS model mice for the past several years.

The recent development of worm (C. elegans) and zebrafish (D. rerio) models of ALS has provided a lot of information about the disease in short period of time.

One of the most difficult barriers to effective treatment in ALS is finding ways to access the site of disease in the brain and spinal cord.

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