We are still smiling after the incredible night spent with the Calgary Flames "Better Halves" at an amazing fundraiser. Each player raffled off a signed ice bucket with a prize included, leading to awareness across the entire Saddledome. A special thank you to Mikael Backlund and Frida Engstrom for your incredible support of the Society. You have made such a significant impact!
Click the image below to read.
Thank you to everyone who donated to the ALS Society of Alberta in honour of Giving Tuesday. We are thrilled to announce that over $6,800 was raised, far exceeding our goal of $5,000. These funds will go to our Support for Champions program, to provide funds for children affected by ALS.
ALS Canada and Brain Canada award $4.5 million in research funding; nearly $20 million invested in ALS research in Canada since 2014’s Ice Bucket Challenge
The ALS Societies across Canada, in partnership with Brain Canada, today announced $4.5 million in funding for nine new ALS research projects. This means that since the Ice Bucket Challenge became a social media phenomenon in 2014, nearly $20 million has been invested in Canadian ALS research at a time when it has the potential to make the greatest impact.
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. Most 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.’
“We hear often from people and families living with ALS that the promise of research discovery is something they can be hopeful about. The challenge is that research takes time, which is exactly what people living with ALS don’t have – and why the Ice Bucket Challenge has been such a game-changer,” said Tammy Moore, CEO of ALS Canada. “Because of the increased funding that the Ice Bucket Challenge has made available, we have been able to make more significant research investments than ever before. We are grateful to Canadians who donated to the Ice Bucket Challenge, to our ALS Society partners across the country and to Brain Canada and the federal government's Canada Brain Research Fund for making this research investment possible.”
“Brain Canada’s partnership with ALS Canada has enabled greater investment in ALS research, which will in turn accelerate progress towards the development of effective treatments,” said Inez Jabalpurwala, President and CEO, Brain Canada Foundation. “In addition, the discoveries that will result from this research funding have the potential to inform how we approach other neurodegenerative diseases with similar underlying mechanisms.”
The nine projects include two large-scale, multi-year team initiatives – one of which is using stem cell technology to better understand and potentially treat ALS, while the other is studying in a new way the gene most commonly linked to ALS development – and seven smaller studies that enable investigators to explore out-of-the-box research.
“Five years ago, the breadth of ALS research we are funding today would not have been possible simply because we didn’t know enough about the disease to be able to ask the kinds of questions that today’s researchers are investigating in their work,” said Dr. David Taylor, Vice President of Research at ALS Canada. “The fact that we now have the ability to explore ALS from different angles reflects the growing body of knowledge about the disease and the increasing likelihood of effective treatments being developed.”
A research team led by Dr. Guy Rouleau of McGill University and the Montreal Neurological Institute has been awarded $2.2 million to study motor neurons and astrocytes created from people living with different forms of ALS via stem cell technology. Dr. Rouleau and his team, which includes other collaborators at McGill University and the Montreal Neurological Institute as well as Université de Montréal and Université Laval, will study the biology of these stem cells to determine if their characteristics in the laboratory can represent different forms of human disease and further develop them as a potential screening mechanism for therapeutics. The tools and tests created in this project will be valuable for both Canadian and global ALS researchers as new resources to understand the disease and find new ways to treat it.
A research team led by Dr. Janice Robertson of University of Toronto has been awarded $1.6 million to understand whether the most common genetic abnormality in ALS, which occurs in the C90RF72 gene, causes or contributes to the disease through a loss of the gene’s normal biological function. The majority of the research community is focusing on how the genetic abnormality in C9ORF72 might lead to an extra, toxic function, but in this five-year study, the team – which includes other collaborators at the University of Toronto as well as Sunnybrook Health Sciences Centre, McGill University and the Montreal Neurological Institute, and the University of British Columbia – will comprehensively analyze the potential damage to motor neurons lacking C9ORF72, and examine if both loss and gain of function mechanisms combine to cause ALS. This knowledge could fundamentally alter how therapeutics are developed for common forms of ALS as well as frontotemporal dementia (FTD), which often occurs with ALS.
Other projects that have been awarded $100,000 each in funding are:
· Dr. Gary Armstrong at the Montreal Neurological Institute and McGill University is using a state-of-the-art technique in genetic manipulation to create new zebrafish models of ALS for the most prominent genetic cause of the disease, which relates to mutations in the C9ORF72 gene.
· Dr. Neil Cashman at the University of British Columbia is using a unique fruit fly model to study whether a key toxic ALS protein can leap between neurons to explain spread of disease throughout the body.
· Dr. Charles Krieger at Simon Fraser University is studying a substance called adducin that is critically linked to health at the site of connection between motor neurons and muscle, in order to understand whether this substance might represent a target for treatment to slow the progression of ALS.
· Dr. Éric Lécuyer at Université de Montréal is using a unique set of scientific tools to comprehensively analyze the contents of key structures in ALS called stress granules.
· Dr. Marlene Oeffinger at the Institut de recherches cliniques de Montréal is studying structures called paraspeckles to understand their content and how they function, as well as how they are altered in neuronal cells that have ALS-causing mutations.
· Dr. Alex Parker at the Université de Montreal is undertaking a study to understand how probiotics slow down the progression of ALS symptoms in worms.
· Dr. Lisa Topolnik at the Centre Hospitalier de l’Université Laval will study how certain neurons called interneurons, which connect to motor neurons in the brain, might be implicated in the early stages of ALS.
All of the research projectswere selected through a competitive peer review process, regarded as the international benchmark of excellence in assessing projects for research funding. The peer review process engages a panel of international experts in ALS and other neurodegenerative diseases in evaluating and ranking all proposed research projects based on their scientific merit and on the potential to most quickly advance the field of ALS research in order to develop effective treatments. All aspects of the peer review process are executed in full partnership with Brain Canada, whose funds are provided through a partnership with Health Canada known as the Canada Brain Research Fund.
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 of caring for one person with ALS is between $150,000 and $250,000. Every day, two to three Canadians will die of ALS.
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.
Brain Canada is a national non-profit organization headquartered in Montreal, Quebec, that enables and supports excellent, innovative, paradigm-changing brain research in Canada. For more than one decade, Brain Canada has made the case for the brain as a single, complex system with commonalities across the range of neurological disorders, mental illnesses and addictions, brain and spinal cord injuries. Looking at the brain as one system has underscored the need for increased collaboration across disciplines and institutions, and a smarter way to invest in brain research that is focused on outcomes that will benefit patients and families. Brain Canada’s vision is to understand the brain, in health and illness, to improve lives and achieve societal impact.
The Canada Brain Research Fund is a public-private partnership between the Government of Canada and Brain Canada, designed to encourage Canadians to increase their support of brain research, and maximize the impact and efficiency of those investments. Brain Canada and its partners have committed to raising $120 million, which is being matched by Health Canada on a 1:1 basis for a total of $240 million. For more information, visit www.braincanada.ca.
A HUGE thank you to Mikael Backlund for hosting our families at last night's Calgary Flames Game! We had such a great time!
YYC Cycle in Marda Loop dedicated their Saturday afternoon classes to the ALS Society of Alberta on October 15. Over $10,100 thanks to the generous support of YYC Cycle, silent auction donors, and the supporters who rode to support Karen Moro. Thank you to Payton Moro for all of your hard work in coordinating this event, and to the instructors at YYC Cycle for donating your time to such a worthwhile cause.
The ALS Society of Alberta was thrilled to host the 2017 WALK for ALS training and planning session on Saturday Oct. 22. WALK Coordinators from across the province came together to share ideas, capture new opportunities and get the wheels in motion for the 2017 WALKs. Thank you to all who took the time our of your busy schedule to participate in the training session. It was a great day full of fresh and exciting ideas!
Thank you to Mikael Backlund for hosting our families at the game on Saturday night! Your generosity and support truly makes a difference in the lives of those affected by ALS, and creates memories that will never be forgotten.
From Oct. 4 - 5, the Phi Delta Theta fraternity will be hosting a 24-hour teeter totter marathon to raise funds for ALS. The fraternity will be teetering for 24 hours straight in hopes of spreading awareness throughout the University of Alberta, and raising funds for the ALS Society of Alberta. Phi Delta Theta orginally became involved with ALS fundraising after Lou Gehrig, a member of the fraternity and professional baseball player, was diagnosed with ALS 75 years ago. For more information, contact Emily@alsab.ca
It was a beautiful Saturday morning for Lethbridge's tenth annual WALK for ALS, which raised $30,000! This years walk kicked-off to the tunes of the Firemen's Bagpipe Band.
Special thanks to Gerard Thom, our 2016 Lethbridge WALK for ALS Ambassador, his wife Shelley and son Adam, for all the heart they put into this years walk. The Thom's hard work, along with their family and friends, treated walkers to face painters, a DJ, a local gymnastics group, and much more!
Thanks to Tami Pedersen, from the Lethbridge Kinette Club, along with all our sponsors, donors, participants and volunteers for making this event such a success. See you next year!
On September 10, the fourth annual Spruce Grove WALK for ALS took place at Central Park. The event was a great success, with over $2,400 raised for client support services in Alberta and national ALS research. Thank you to everyone who helped to make the Spruce Grove WALK possible!
Big Drew's Big Ride 2016 was a wonderful success, raising $9,400! A great ride was had by all and, as hoped, there was plenty of Drew's style of teasing, laughing and - in the end - big eating!
Thank you to Jim Robinson and Carmen Jeam for your hard work in making the ride happen every year!
We had a blast on Saturday "Pushing-up against ALS!" The bootcamp raised over $500 for the Society! Thank you to all participants and donors, and to Fit Body Bootcamp!
The ALS Society of Alberta was thrilled to hear that this year's Quonset Days raised nearly $72,000! This is a record-breaking achievement, with over 1,000 people in attendance raising awareness for ALS in Southern Alberta. Thank you to Janet Biemans and family for the hard work you put into the event each and every year!
The fifth annual Saz's Soldiers Charity ALS Golf Tournament took place in Beaumont at the Coloniale Golf Club on August 12. A huge thank you to Tanya Sasyniuk and family for all of the hard work you put into this event each year!
Earlier this week researchers announced that the gene NEK1 has been found to play a significant role in the development of amyotrophic lateral sclerosis (ALS). This landmark discovery is the result of an 11-country research collaboration that was funded through the ALS Ice Bucket Challenge. The research team included 3 Canadians, one of whom was directly funded by the national ALS Canada research program. Albertans raised a remarkable $2.8 million for the ALS Society of Alberta during the Ice Bucket Challenge, of which $2 million was invested in the national ALS research program.
This finding will trigger future studies that focus specifically on the NEK1 gene. It is a compelling example of how donor dollars can lead to landmark research results, and speaks to the ongoing need to fund ALS research. In Canada, the Ice Bucket Challenge resulted over $20 million of research funding provided by provincial societies across the country. This historic achievement is more than 10 times the typical annual investment!
Want to participate in the 2016 #ALSIceBucketChallenge? Click here to get started.
Swing for ALS took place on July 9 at the Grand Centre Golf Course in Cold Lake, with a mixed best ball scramble. This wonderful event takes place every year in honour of Melanie Lefebvre. A big thank you to event organizer Leon Lefebvre and family, and to Pat Feduniak for being the MC! Another big thank you to everyone who volunteered, supported and participated in this heartfelt event!
As the Bustin' Out ALS Stampede fundraiser quickly approaches, some of our furry friends wanted to participate in helping us promote the event! To get your paws on a signature purple bandana, find the "Events" tab on our website and get your tickets to Bustin' Out ALS. At the event, for $30, you will be able to purchase a bandana and raffle ticket for your chance to win one of 30 unique prizes we have lined up! ALL proceeds will go toward the ALS Society of Alberta. We hope to see you there!
Kivi wears her ALS Society of Alberta bandana to help spread ALS Awareness!
Alfred Jongkind, is considered a very proud business man. In 1958 in Edmonton - Alfred started Al-Brite Manufacturing Jewellers Ltd. He has a passion for custom design jewelry, quality workmanship, exceptional customer service along with hard work and dedication. In 1958, his business was first located in the 101 Street Kitchen Building in Edmonton for 20 years. He then moved to the Bental Building and is currently at Enbridge Place downtown Edmonton. Alfred cleverly named the business ‘Al-Brite’ because ‘Al’ stands for Alfred and ‘Brite’ means that jewelry is bright. He has been a certified gemologist and master goldsmith for 65 years and he has kept the same stunning work bench throughout his career. In 2002, Alfred turned the business over to his four children. Between Alfred, his wife, four children and grandson, they have a combined total of approximately 230 years of customer service in 58 years. Alfred keeps up his knowledge through reading magazines and he continues to work at the business 7-8 hours per week. Alfred and his wife Shirley married on October 29, 1951 (65 years) and have been in the same house since 1955 (61 years). In his earlier years, he enjoyed many activities with his friends; pool, lawn bowling, YMCA Member, travelling, poker and Las Vegas.
Together, with the support of their children and grandchildren, the business has now become a Third Generation Family Business of 58 years. Humbly, Alfred says ‘he rarely missed a day of work in 58 years, but if he does now he has to make up the time’.
Gloria has many natural talents along with her witty sense of humor and spicy bright personality. Gloria combines all three of these qualities plus many more to #MakeItPossible. At an early age she started to sing and continues to do so every day; beautifully I was told. She has a love for all types of music and listens to it every day including gospel, opera, blues, rock and roll, Ukrainian, Led Zeppelin and Pit Bull; she considers herself a natural go with the flow pro rapper. She used the beats of her music to cleverly clean her house – wipe here, wipe there, squirt here, squirt there and polka and rap at the same time.
Gloria has a passion for decorating inside and out. Every season she brings out Spring, Summer, Fall, and Winter colors inside and outside of the house. She has consulted many friends and family members on Gloria’s Decorating Tips and Ideas on how to make your home looking beautiful and even on a budget. She is a Feng Shui guru and keeps her talent and knowledge up by reading decorating magazines and decorating TV shows. Together Gloria and Sandy have continued to make their home warm and inviting. Not only do the two decorate together but also are dedicated to watching their favorite NFL Football Team the New England Patriots. Gloria has taken a liking to quarterback Tom Brady. Gloria enjoys the peaceful and serene setting of her front yard but especially her back yard. There she can enjoy all different types of birds, squirrels, tall trees, flowers and even the odd bat that Yannie her caregiver discovered underneath her patio umbrella as she was opening it! Yannie is a daily ray of sunshine in their home; from amazing cooking, wonderful care giving and just being part of their family.
Their home has become party central for all special occasions since there are 5 grandkids all under the ages of 7. Gloria says “I always thank God and feel very lucky to have such a wonderful man – my husband by my side, my family and friends who fill my life with happiness and hope”.
