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

June 28 - Angus "Scotty" Smith

Angus Smith, better known as “Scotty”, is a celebrated musician, teacher and a ham radio operator. One of his proudest successes was when he made contact with astronaut Chris Hadfield. Scotty has not let ALS stop him from sharing his musical gifts, and he still shares or offers instruction. His past students even visit and play for him. Scotty is originally from Scotland; he jokes about renaming his Stratocaster guitar the “Scottocaster”. He has played with musicians from all over the world and played at very prominent venues. This very talented man continues to share his stories and everyone is simply drawn to him.  Scotty shares what a difference the ALS Society has made. The tilt manual chair and the EZ-lift chair have made getting around and relaxing less of a challenge and are #MakingitPossible for Scotty to embrace his greatest passions!

June 27 - Helen Banks

We are nearing the end of ALS Awareness Month, but we still have some incredible stories to share! Today we are celebrating Helen Banks and how she uses mobility equipment when #MakingitPossible to live each day to the fullest. 

"When I was diagnosed with ALS, my daughter Kim and family invited Jim and me to live with them in the Bar-F Ranch House just west of Hinton so they can assist Jim in looking after me. I am very grateful to the amazing ALS Society for providing a lift chair, walker and scooter so I can manoeuvre the long distance from the kitchen to the parlour and outdoors. Energy management is one of my greatest challenges and the equipment makes life easier. Many thanks to the ALS Society staff!

In order to maintain a positive outlook, I treat life as an adventure and moving in with the Tew family has just extended my adventure." - Helen Banks

June 23 - Wayne MacIntosh

For today's #MakingitPossible story, we would like to honour Wayne MacIntosh, a Fort McMurray resident who is currently living with ALS. In April of 2014, Wayne began experiencing muscle twitches, weakening, weight loss and fatigue. His doctor at the time was unfamiliar with ALS, driving Wayne to consult with a different doctor, who then referred him to a neurologist. After several weeks of testing, Wayne’s neurologist concluded that he most likely had ALS, and referred him to the ALS Clinic at the University of Alberta where the diagnosis was confirmed.

At first, Wayne found it shocking to learn that he had acquired a disease with no cure that is typically fatal within three to five years from symptom onset. Over the next few months he retired from his job and spent time with friends and family across Canada and in the United States. Wayne has also acted as an Ambassador for the Fort McMurray WALK for ALS, taking place on July 16 in Birchwood Trails. 

“The love of my friends and family and the hope for a cure for this terrible disease is the fuel that provides me with the inspiration to be thankful for the life I’ve lived, and make the best of each and every day I have left,” Wayne said. “The WALKs for ALS are extremely important in raising awareness of this disease, and help fund research that will one day find a cure.”

Thank you, Wayne.

June 22 - Henri Unverricht

It is day 22 of ALS Awareness Month, and today we are celebrating the 2017 Camrose WALK for ALS Ambassador, Henri Unverricht! Thank you Henri for #MakingitPossible to raise further awareness in the Camrose area. Be sure to join us this Saturday for the Camrose WALK for ALS! Visit www.walkforals.ca for further details. 

"Without the ALS Society, I wouldn't have been able to stay at home as long as I could. It's always done on a family level. We are one big family - personal connection with the people, both family and staff. My sleep quality is very good with the bi-pap; it helped right off the bat. The moral and physical support is exceptional as well as support for the family. In the summer of 2015 I experienced shortness of breath and in May of 2016 I was diagnosed with ALS. I lived in Camrose with my wife Violet since 1993 until 2004. In 2004, we moved to Edmonton, then back to Camrose in 2012 where my wife was born and raised. I was born in Lausanne, Switzerland." - Henri Unverricht

June 20 - Adrian Bussiere

ALS Awareness Month is flying by! It is already day 20, and today we are celebrating Adrian Bussiere. Adrian has been provided with equipment from the ALS Society that has been #MakingitPossible for him to live comfortably and preserve his precious energy. When asked about his favourite equipment, Adrian said that he loves his lift chair as it keeps the swelling down in his feet and is super comfortable. He also finds his stair lift to be a necessity as it gives him access to his house and garage, which saves much of his energy. Thank you for sharing your story, Adrian!

June 19 - Dave Williams

We are back with another incredible story from the ALS community. Dave Williams is a committed member of the ALS Society's Board of Directors, while navigating his own PLS diagnosis. He is most grateful for the communicative equipment that the Society has provided him with, such as the iPad that he uses regularly. He added that he is also grateful for the support he receives with any difficulties he encounters while using his equipment. 

While Dave may appreciate the ALS Society of Alberta's support services, we truly appreciate the dedication he has to raising awareness and #MakingitPossible to channel hope for a future without this disease. Thank you, Dave!