ALS Client Services Conference

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Building strength, support and capacity across Canada with our client services so we can provide the best possible support for people living with and affected by ALS. 

The first-ever client services conference for the ALS Societies across Canada was hosted in Alberta from November 14-16. This three-day conference offered the Societies' client support staff to discuss best practices of ALS support and advocacy while providing an opportunity for self-care and wellness. 

Hosted at the Banff Centre, the conference began with a discussion of the different programs and services offered across Canada for people living with and affected by ALS. Staff discussed innovative solutions for client support, and shared the practices of each province. The conference was grateful to have Frida Engstrom present about the support services available in Sweden, and how Canada is leading the charge in support for those affected by the disease. 

Self-care and coping strategies were the focus of the second day. Dr. Douglas Cave of the Centre for Practitioner Renewal joined the conference to develop an understanding of coping strategies for those supporting people living with ALS, including both staff and caregivers. 

The final day of the conference gave the Societies' an opportunity to refine their advocacy skills and participate in case studies related to the provision of care for those affected by ALS. Open Arms Advocacy joined the conference to discuss advocacy at an individual and community level, including engagement with health and social service organizations, politicians, and government. 

The ALS Societies across Canada would like to thank each and every speaker, participant and volunteer that helped make this conference such a success. By bringing Canada's ALS support staff together, opportunities for collaboration and program enhancement can occur to help make a stronger impact in the lives of those affected by this disease. 

The Societies are so grateful for the outstanding skill and resilience that its client support staff possess, and are sure that they will continue to empower the ALS community for years to come.

 

2017 funding competition completes $20 million research partnership with the Brain Canada Foundation following the Ice Bucket Challenge

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The results of the 2017 funding competition for Canadian ALS research was announced today. Twelve exciting projects were chosen, including a multi-year study of a promising drug combination, three trainee grants that will help to nurture the next generation of Canadian ALS researchers currently pursuing their PhDs, two projects that will explore how ALS treatments could be delivered through the bloodstream, and an initiative that seeks to understand why the muscles of the eyes are often more resilient to ALS as other muscle groups shut down. 

These projects were made possible by the contributions from the ALS Societies across Canada and matching funds by Brain Canada, including the 40 per cent of proceeds dedicated from the WALK for ALS and Betty’s Run for ALS. 

The research being funded in 2017 seeks to answer the following questions that will help to move us from greater understanding of ALS to the development of therapies for human use:

• Can adjusting the levels of a “guardian” protein protect a protein that becomes toxic in most cases of ALS? $125,000 awarded to Dr. Marco Prado with collaborators Dr. Martin Duennwald and Dr. Flavio Beraldo, all from Western University

• Can image-guided focused ultrasound technology be used safely in people living with ALS as a means of delivering future treatment? $124,948 awarded to Dr. Lorne Zinman with collaborators Dr. Nir Lipsman, Dr. Kullervo Hynynen, Dr. Sandra Black, Dr. Todd Mainprize, and Dr. Agessandro Abrahao, all from the University of Toronto

• Can microscopic bubbles in our bodies be used to deliver ALS treatments through the bloodstream? $125,000 awarded to Dr. Derrick Gibbings with collaborators Dr. Baptiste Lacoste and Dr. Maxim Berezovski, all from the University of Ottawa

• Could targeting the activity of motor neurons in the spinal cord be a new way to diagnose and treat ALS? $125,000 awarded to Dr. Yves De Koninck, Université Laval

• Could the change in communication processes between motor neurons and the immune cells of the nervous system after an ALS diagnosis help to identify new treatment targets? $124,930 awarded to Dr. Stefano Stifani, McGill University

• Could touchscreen technology help to improve testing for the cognitive impairment that occurs in some cases of ALS? $110,770 awarded to Dr. Flavio Beraldo with collaborators Dr. Marco Prado and Dr. Vania Prado, all from Western University

• Could whole genome sequencing reveal new areas of genetic mutations that make some people more likely to develop ALS? $75,000 awarded to Jay Ross, a PhD student in Dr. Guy Rouleau’s lab at McGill University

• How might misfolded proteins that occur in ALS cause cells to die? $50,000 awarded to Sonja Di Gregorio, a PhD student in Dr. Martin Duennwald’s lab at Western University

• What can we learn from mice that are able to walk almost normally despite significant loss of motor neuron function? $125,000 awarded to Dr. Turgay Akay, Dalhousie University

• Why are eye muscles more resistant to ALS, and what can we learn about this that could help to preserve the function and use of other muscles? $121, 048 awarded to Dr. Richard Robitaille with collaborator Danielle Arbour, both from Université de Montréal

• Will probiotics that improve ALS symptoms in worms also work in mice? $75,000 awarded to Audrey Labarre, a PhD student in Alex Parker’s lab at the Université de Montréal
 

Support the ALS Society of Alberta through Giving Tuesday

November 28, 2017

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We would like to invite you to help us support youth affected by ALS in Alberta.

The Support for Champions program allows children whose parents are affected by ALS to participate in childhood activities that may not be available to them due to the immense financial burden of ALS. The program invites parents or children to apply to the Society for funding for events or activities that the child would like to participate in. 

"My son, Owen, received money for his basketball season this year from the Support for Champions program. His father has been living with ALS for the past five years. Owen loves playing basketball, skiing, biking, skateboarding and playing video games. When he is visiting his dad, he makes paper airplanes to hang in his room. He is a creative, active and loving seven-year-old and we thank the Support for Champions program for giving him the opportunity to play basketball this year".

The need for this type of support is real and is currently not being met for many families in Alberta. Many families do not have the financial means and social network to be able to ensure that the children affected by ALS are still able to engage in social activities, deal with their grief and anger appropriately, enjoy childhood despite their parents suffering and look forward to a bright and promising future. For some families there is a real struggle in balancing financial responsibilities and recreational activities, a struggle that the Support for Champions program aims to help.

"I would like to thank you for supporting my mum, to help us purchase my transportation passes for this semester. We appreciate your continuing support." - a Support for Champions recipient.

ALS is a devastating disease with no known cause or cure. Families and caregivers rely on the ALS Society of Alberta to provide hope and support during their journey with the disease. Without the Society’s support, many families would experience a grave financial burden in addition to the emotional burden of the disease. ALS can strike anyone at any time regardless of age, sex or ethnic origin and the average life expectancy after diagnosis is only three to five years. 

We appreciate your consideration in helping us to meet our mission of “making each day the best possible day for people living with and affected by ALS.” 

Uncorked for ALS

On Friday November 10, the Calgary Flames Foundation hosted Uncorked for ALS, raising awareness and funds for ALS research. The fundraiser was inspired by Mikael Backlund and his fiancee Frida Engstrom, who lost her mom to ALS in Sweden. 

We are so fortunate to have the support of the Calgary Flames community. Thank you!

Spotlight on Dr. Sanjay Kalra: The largest ALS research grant recipient in Canada's history

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The ALS Society of Alberta is proud to be one of the largest donors to the national ALS research program, which funds incredible researchers in Alberta and nationwide. ALS is difficult to diagnose because no single test or procedure can firmly identify the disease. Current diagnostic tests for ALS focus on ruling out other diseases that share similar initial symptoms. For example, magnetic resonance imaging (MRI) is a test typically used to eliminate a diagnosis of cancer, multiple sclerosis or pressure on the spinal cord due to arthritis. A standard MRI analysis of a person with ALS, however, usually shows normal results.

The lack of a reliable diagnostic test for ALS means that it takes on average about a year for a diagnosis to be confirmed. “The delay means we can’t help people sooner, nor identify them early enough to enter a clinical trial,” said Dr. Sanjay Kalra in an interview. “This issue is actually hindering the clinical investigation of drug therapies. If we could identify people with different types and progressions of ALS more quickly, we could find a breakthrough therapy faster. A test is desperately needed that can determine if a drug is working in clinical trial.” Dr. Kalra is a professor in the department of medicine (neurology) and member of the Neuroscience and Mental Health Institute at the University of Alberta.

Looking for ALS in Brain Images

Dr. Kalra has been intrigued with finding a way to harness the power of imaging to uncover the early signs of ALS since his medical residency when he met neurologist Dr. Douglas Arnold, an MRI specialist at the Montréal Neurological Institute and Hospital. “My residency research rotation was only supposed to last six months, but after realizing the potential power of this technology in research and really enjoying working with people with ALS, I decided to continue and eventually stayed as a postdoctoral fellow specializing in MRI for ALS,” said Dr. Kalra.

Dr. Kalra has secured funding for his imaging research program from a number of sponsors including the Canadian Institutes of Health Research (CIHR), the major agency of the Canadian government responsible for funding health research in Canada. His focus has been to develop and validate advanced MRI methods that can be used as a biomarker, a biological marker that allows physicians to detect disease earlier, monitor disease progression and evaluate new therapies.

In 2013 he founded the Canadian ALS Neuroimaging Consortium (CALSNIC), a multidisciplinary team of experts from across Canada that includes neurologists, MRI scientists, computing scientists, neuropathologists and a biostatistician. Since then, the CALSNIC team has been working together on a national scale to develop advanced MRI methods to find biomarkers in people with ALS and related conditions.

Dr. Kalra and three colleagues at the University of Alberta in Edmonton conducted a preliminary study in 2014-2015 to look for biomarkers in brain images using MRI scans of 19 people with ALS and 20 healthy participants for comparison. They analyzed the images with 3D texture analysis, an advanced method that allowed them to look for statistically significant patterns of brain degeneration not normally visible to the naked eye. They examined voxels, tiny 3D spaces in the brain about a cubic millimetre in size.

The researchers found different texture features in regions of the brain affected by ALS and frontotemporal dementia in people with ALS compared to people without ALS. They also discovered that some features were associated with clinical observations, such as disease duration and differences in finger tapping speed. The study was funded in part by an ALS Canada Discovery Grant.

Going Big: The First Large Imaging Study in the World

Based on encouraging research results in this preliminary study and other work, Dr. Kalra wants to confirm the findings in a larger group of people with ALS. “The ALS field has seen an explosion of imaging studies in the last five years, but for the most part, they have been single-centre studies that used different methods in small groups of patients, so it has been difficult to draw conclusions on the best method to use,” he said. “To develop and validate the use of MRI biomarkers , especially for their potential use in clinical trials, we need to confirm that our these methods will work well on a large scale, in every clinic.”

In 2015, Dr. Kalra and a team of 13 other investigators applied for a grant from ALS Canada and were successful. The resulting ALS Canada – Brain Canada Arthur J. Hudson Translational Team Grant of $2.94 million – the largest grant awarded in ALS Canada’s history – is funding the first large multicentre imaging study focused on ALS in the world, according to Dr. Kalra. The study seeks to enroll over 700 volunteers split between people with ALS and people without ALS for comparison in seven locations: Calgary, Edmonton, Vancouver, London, Toronto, Montreal and Quebec City. Some sites are currently recruiting and others will be up and running soon. Participants receive a baseline MRI and clinical evaluation followed by two follow-up visits.

Always thinking ahead, Dr. Kalra is already considering how to expand CALSNIC further to increase the value of the network. “Another purpose of setting up the CALSNIC infrastructure is that it allows us to probe other questions. I’m excited that it has spurred other ALS research and collaborations,” said Dr. Kalra, “such as at the University of Toronto where Dr. Yana Yunusova is studying speech changes in patients across the CALSNIC network and will be able to compare the findings with our imaging data. In the future, I would like to see CALSNIC build a comprehensive resource of tissue, imaging and clinical descriptions that all scientists can access to understand the disease better.”

2017 Lethbridge WALK for ALS

On Saturday Sept. 9, the Lethbridge ALS Community gathered for the annual WALK for ALS in Henderson Lake Park. For the past two years, the Thom family has planned and organized the WALK, and introduced a number of unique fundraising initiatives in the area. This year, we WALKed in memory of Gerard Thom, an incredible husband, father, friend and ALS advocate who passed away in June. Thank you to all supporters, donors, attendees and volunteers.

The ALS Compassionate Heart

The Fifth Avenue Collection is donating $20 to the ALS Society for each ALS Compassionate Heart necklace purchased in Alberta. The ALS Compassionate Heart is a symbol of caring and support for people affected by ALS, the client, family, friends, physicians and caregivers. The ALS Compassionate Heart features 61 Swarovski Crystals each individually encased in a bezel setting. The pendant and the chain are finished in a rich Rhodium Finish. The chain is 20” and adjusts to 22”. It is nickel, lead and cadmium free.

Cost is $59.99 and includes tax and shipping.

June 30 - Colin Davis

Wow, today marks the final day of ALS Awareness Month. We are so grateful for each and every story we received, and it was an absolute privilege to share the ways that our clients, volunteers, and donors are #MakingitPossible. 

Today we celebrate one of the most committed, hard-working fundraisers in the country, Colin Davis. Each year, he works tirelessly to raise funds for Betty's Run for ALS. Betty’s Run is all about inspiring care, hope and community for those living with and affected by ALS.

Fourteen years ago, Colin lost his Mom to ALS. Ever since, he has quietly worked behind the scenes to support the ALS cause. Incredibly, Colin has raised over $200,000 for ALS research and client support. Most importantly, Colin does this because he wants to make a difference and by sharing his story with his friends and family. Colin has raised an incredible amount of awareness about ALS.

It is Colin’s belief and commitment to ensure people living with ALS receive the necessary support and also to help to find a cure. The ALS Society could not provide the supports without the great work of Champions like Colin. Thank you Colin for #MakingitPossible.

June 29 - Peter Benders

Today we are celebrating the 2017 Hinton WALK for ALS Ambassador Peter Benders and his inspiring dedication to raising awareness in his community. 

“Hi, my name is Peter Benders. I am 67-years-old and have been living in the Edson area for 38 years. I have worked as an electrician in the oil field. I retired at 65 and started working on all of the unfinished projects at home. This lasted for about a year, but later that summer I noticed slight muscle twitching in my arms. In addition, I began to experience cramps in my hands and arms, and some muscle weakening. Shortly after my first symptoms, I saw my doctor who was not taking any chances and referred me to a neurologist. The test results were not positive at the time, but she wanted to see me back in six months. At that time she told me “I hope I am wrong, but I think it is ALS,” and referred me to the ALS Clinic at the University of Alberta Hospital where the diagnosis was confirmed. Still not knowing how bad this disease actually was, I was undergoing more tests. The first time I met with the ALS team I was asked questions like “Can you still eat, breath, talk, look after yourself, etc.” I then knew what I was facing.
Fortunately for me the progression of my ALS journey has been relatively slow. I always had love for motorcycles and the outdoors which gave me the opportunity to see this beautiful country from the seat of a motorcycle and from the top of the mountain.

With all of this in mind and the help of the ALS Society of Alberta, the ALS team at the University of Alberta, Edson Healthcare Group, the love of my friends and family and the support of Mikael Backlund with the Calgary Flames who helped in #MakingitPossible for me and my family to go to the Flames vs. LA game in February; all of this inspires me to continue and be thankful for the life I have lived and to make the best of each day I have left.

The love and support of my family, most of them in the Netherlands and the financial support by Canadians gives me hope that one day we will find a cure. The WALK for ALS is extremely important in raising the awareness of this disease. Hope to see you all at the Hinton WALK for ALS on Sept. 10, 2017. Thank you.” – Peter Benders