When I was diagnosed with ALS the outpouring of support from friends and family was and still is overwhelming. Travis & I could not face this devastating illness without you. From quilts, to events, to food, to travel, to laughter and tears, the gestures from the smallest to the grandest have filled our hearts with a humbling appreciation.
One of the most awe-inspiring moments we have received is when Dayne, Travis's brother and Kate my beloved sister-in-law, told us that they would be moving to Canada from New Zealand to be with us. Well, if that doesn't move you to tears then I don't know what will!
I have been waiting until Dayne resigned from his job to tell you all, but we have known about this for some time. They have booked their tickets, leased their house and have a one year work visa already arranged. They will be moving to Ottawa March 18th. Dayne will be looking for work, he is a brilliant hard working economist, so if anyone knows of any job opportunities please pass them along! I will also be calling on my Ottawa friends to help me welcome them to Canada and perhaps keep them company while we leave them for a month in April to travel to Asia. The love and generosity Dayne & Kate are giving us is beyond words, and I don't know if I can ever show the full extent of my gratitude!
One of the most awe-inspiring moments we have received is when Dayne, Travis's brother and Kate my beloved sister-in-law, told us that they would be moving to Canada from New Zealand to be with us. Well, if that doesn't move you to tears then I don't know what will!
I have been waiting until Dayne resigned from his job to tell you all, but we have known about this for some time. They have booked their tickets, leased their house and have a one year work visa already arranged. They will be moving to Ottawa March 18th. Dayne will be looking for work, he is a brilliant hard working economist, so if anyone knows of any job opportunities please pass them along! I will also be calling on my Ottawa friends to help me welcome them to Canada and perhaps keep them company while we leave them for a month in April to travel to Asia. The love and generosity Dayne & Kate are giving us is beyond words, and I don't know if I can ever show the full extent of my gratitude!
Bonspiel
We are pleased to announce that registration is now open for the 2nd Annual Curling for Carol event. Last year was a fantastic inaugural gathering full of wacky costumes, good food, cocktails, prizes, curling and good company.
Participants last year included coworkers, staff from partner agencies, family and friends. Youth, 13 and older are welcome to attend as well.
This year's event will be Saturday March 14th, 12-4pm, with registration at 11am. There is always room on the ice for early birds to take some practice shots during the registration hour. The Nepean Sportsplex welcomes us back again and will be catering a pizza lunch, included in your registration fee.
You may sign up as a full 4 person team, a partial team or as an individual. No experience necessary.
Please speak with Julie Levesque or Marie Delorme for more information.
Julie Levesque: jarseneault17@hotmail.com
Marie Delorme: mdelorme@cmhaottawa.ca
Participants last year included coworkers, staff from partner agencies, family and friends. Youth, 13 and older are welcome to attend as well.
This year's event will be Saturday March 14th, 12-4pm, with registration at 11am. There is always room on the ice for early birds to take some practice shots during the registration hour. The Nepean Sportsplex welcomes us back again and will be catering a pizza lunch, included in your registration fee.
You may sign up as a full 4 person team, a partial team or as an individual. No experience necessary.
Please speak with Julie Levesque or Marie Delorme for more information.
Julie Levesque: jarseneault17@hotmail.com
Marie Delorme: mdelorme@cmhaottawa.ca
Click on "Read More" if you are interested in a new clinical trial for ALS due to the donations from the Ice Bucket Challenge:
We are proud to announce funding for a new clinical trial from your donations through theALS Ice Bucket Challenge and ALS Canada's partnership with Brain Canada and the Government of Canada
The Arthur J. Hudson Translational Team Grant was first announced on May 3, 2014 at the ALS Canada Research Forum and the inaugural competition deadline was July 1, 2014. This new grant program is designed to fund teams of Canadian researchers to accelerate the movement of ideas out of the laboratory and into the clinic with the hope of assisting development of new therapeutics for ALS. It is the cornerstone of our ALS Canada Research Program designed to emphasize bench-to-bedside translation. For the first time ever, ALS Canada, in partnership with Brain Canada, have utilized an International Peer Review Panel consisting of seven European and American ALS experts, spanning the basic to clinical spectrum, who convened in Toronto in November to determine the top project amongst strong competition.
It is a great pleasure to announce that the recipient of the first Arthur J. Hudson Translational Team Grant is a team led by Dr. Lawrence Korngut, MD at the University of Calgary and also includes Dr. Lorne Zinman, MD from Sunnybrook Health Sciences Centre and University of Toronto. Together, they will pursue "A randomized controlled trial of pimozide in subjects with ALS"; a Phase II study involving 100 participants across 8 ALS clinics across Canada.
This trial, led by the Principal Investigator of the Canadian Neuromuscular Disease Registry (CNDR) and the Chair of the Canadian ALS Research Network (CALS) will examine whether pimozide, a drug already approved by Health Canada for use in psychoses like schizophrenia and Tourette's syndrome, might slow progression of ALS. Pimozide is particularly effective at stabilizing neuromuscular function, which means it can strengthen the connection where the motor neuron meets the muscle (called the neuromuscular junction or NMJ). It is hoped that by strengthening this connection, there will be preservation of transmission of signals from the brain to the muscle and slowing of paralysis in ALS.
This Hudson Grant will also fund the validation of an exciting new potential biomarker. Biomarkers are ways of monitoring the body (eg. looking for something in blood or doing a particular physical examination) to either diagnose ALS earlier, select individuals for a trial or monitor effectiveness of a treatment. In recent years, ALS researchers have placed great emphasis on clinical trial biomarkers that ensure the drug is doing the action it is intended to in humans. Without knowing this, it is impossible to determine if an experimental ALS treatment worked or didn't work as a result of affecting the body function scientists think it was targeting. For example, it was believed that the Biogen drug dexpramipexole, which was tested in a Phase III clinical trial in 2012, improved the function of energy producing machinery in cells called mitochondria. When dexpramipexole failed to slow down ALS progression, there was no biomarker used to determine if this failure was a result of mitochondrial function or not because it was not tested.
In ALS clinics, neurologists utilize a procedure where they can stimulate an individual's motor neurons to examine their ability to trigger muscle function. For decades, neurologists have observed that repetitive stimulation of motor neurons can lead to decreased response of muscles in many people living with ALS (called decremental response) and it is hypothesized that this may be a result of poor NMJ connectivity and transmission as motor neurons degenerate. Since pimozide strengthens or restores the NMJ, Dr. Korngut's team will measure whether this decremental response can be a biomarker to recruit individuals likely to benefit from pimozide, but also to monitor whether pimozide is acting as hypothesized so a positive or negative result on ALS can be properly interpreted. This means if pimozide does slow ALS progression, we will know whether or not it is a result of NMJ connectivity.
"What is most exciting about this portion of the project is that Dr. Korngut will examine the effectiveness of this biomarker in a small pimozide human trial that is already underway at the University of Calgary," said Dr. David Taylor, Director of Research for ALS Canada. "Should it work, the biomarker can also be used to recruit individuals with the highest likelihood to respond to pimozide treatment for the Hudson Grant funded, 100 participant clinical trial across the country."
This project will also highlight the exceptional infrastructure of the Canadian ALS research community. The CNDR, led by Dr. Korngut, is an innovative platform for organizing patient information to facilitate clinical research and is routinely recognized as one of the best organized ALS registries in the world. In this trial, the CNDR will allow for more efficient recruitment of participants, better data management and improved monitoring of participants following the trial. Furthermore, CALS, led by Dr. Zinman, is the incorporated network of 15 academic ALS multidisciplinary clinics across Canada. Working together the CNDR and CALS are utilizing optimal infrastructure to initiate and execute clinical trials in a manner that is unique to Canada.
Testing pimozide in the clinic is the next step in a series of projects that have taken several years to develop. Pimozide was first discovered as a potential treatment for ALS in the Canadian labs of Drs. Pierre Drapeau, Alex Parker and Richard Robitaille at Université de Montréal working with zebrafish, worm and mouse genetic models. These individuals are pioneers of the translational team concept in Canada and ALS Canada/Brain Canada are fortunate to have the opportunity to support the first large clinical study produced by this visionary pipeline. We look forward to watching the progress of this study with great excitement. ALS Canada is committed to increasing the opportunity for Canadians living with ALS to participate in clinical trials of exciting new experimental therapeutics. The first Arthur J. Hudson Translational Team Grant will provide this opportunity and lay further groundwork for future clinical trials in Canada.
Cordially,
Dr. David Taylor
Director of Research
ALS Canada
dt@als.ca
The Arthur J. Hudson Translational Team Grant was first announced on May 3, 2014 at the ALS Canada Research Forum and the inaugural competition deadline was July 1, 2014. This new grant program is designed to fund teams of Canadian researchers to accelerate the movement of ideas out of the laboratory and into the clinic with the hope of assisting development of new therapeutics for ALS. It is the cornerstone of our ALS Canada Research Program designed to emphasize bench-to-bedside translation. For the first time ever, ALS Canada, in partnership with Brain Canada, have utilized an International Peer Review Panel consisting of seven European and American ALS experts, spanning the basic to clinical spectrum, who convened in Toronto in November to determine the top project amongst strong competition.
It is a great pleasure to announce that the recipient of the first Arthur J. Hudson Translational Team Grant is a team led by Dr. Lawrence Korngut, MD at the University of Calgary and also includes Dr. Lorne Zinman, MD from Sunnybrook Health Sciences Centre and University of Toronto. Together, they will pursue "A randomized controlled trial of pimozide in subjects with ALS"; a Phase II study involving 100 participants across 8 ALS clinics across Canada.
This trial, led by the Principal Investigator of the Canadian Neuromuscular Disease Registry (CNDR) and the Chair of the Canadian ALS Research Network (CALS) will examine whether pimozide, a drug already approved by Health Canada for use in psychoses like schizophrenia and Tourette's syndrome, might slow progression of ALS. Pimozide is particularly effective at stabilizing neuromuscular function, which means it can strengthen the connection where the motor neuron meets the muscle (called the neuromuscular junction or NMJ). It is hoped that by strengthening this connection, there will be preservation of transmission of signals from the brain to the muscle and slowing of paralysis in ALS.
This Hudson Grant will also fund the validation of an exciting new potential biomarker. Biomarkers are ways of monitoring the body (eg. looking for something in blood or doing a particular physical examination) to either diagnose ALS earlier, select individuals for a trial or monitor effectiveness of a treatment. In recent years, ALS researchers have placed great emphasis on clinical trial biomarkers that ensure the drug is doing the action it is intended to in humans. Without knowing this, it is impossible to determine if an experimental ALS treatment worked or didn't work as a result of affecting the body function scientists think it was targeting. For example, it was believed that the Biogen drug dexpramipexole, which was tested in a Phase III clinical trial in 2012, improved the function of energy producing machinery in cells called mitochondria. When dexpramipexole failed to slow down ALS progression, there was no biomarker used to determine if this failure was a result of mitochondrial function or not because it was not tested.
In ALS clinics, neurologists utilize a procedure where they can stimulate an individual's motor neurons to examine their ability to trigger muscle function. For decades, neurologists have observed that repetitive stimulation of motor neurons can lead to decreased response of muscles in many people living with ALS (called decremental response) and it is hypothesized that this may be a result of poor NMJ connectivity and transmission as motor neurons degenerate. Since pimozide strengthens or restores the NMJ, Dr. Korngut's team will measure whether this decremental response can be a biomarker to recruit individuals likely to benefit from pimozide, but also to monitor whether pimozide is acting as hypothesized so a positive or negative result on ALS can be properly interpreted. This means if pimozide does slow ALS progression, we will know whether or not it is a result of NMJ connectivity.
"What is most exciting about this portion of the project is that Dr. Korngut will examine the effectiveness of this biomarker in a small pimozide human trial that is already underway at the University of Calgary," said Dr. David Taylor, Director of Research for ALS Canada. "Should it work, the biomarker can also be used to recruit individuals with the highest likelihood to respond to pimozide treatment for the Hudson Grant funded, 100 participant clinical trial across the country."
This project will also highlight the exceptional infrastructure of the Canadian ALS research community. The CNDR, led by Dr. Korngut, is an innovative platform for organizing patient information to facilitate clinical research and is routinely recognized as one of the best organized ALS registries in the world. In this trial, the CNDR will allow for more efficient recruitment of participants, better data management and improved monitoring of participants following the trial. Furthermore, CALS, led by Dr. Zinman, is the incorporated network of 15 academic ALS multidisciplinary clinics across Canada. Working together the CNDR and CALS are utilizing optimal infrastructure to initiate and execute clinical trials in a manner that is unique to Canada.
Testing pimozide in the clinic is the next step in a series of projects that have taken several years to develop. Pimozide was first discovered as a potential treatment for ALS in the Canadian labs of Drs. Pierre Drapeau, Alex Parker and Richard Robitaille at Université de Montréal working with zebrafish, worm and mouse genetic models. These individuals are pioneers of the translational team concept in Canada and ALS Canada/Brain Canada are fortunate to have the opportunity to support the first large clinical study produced by this visionary pipeline. We look forward to watching the progress of this study with great excitement. ALS Canada is committed to increasing the opportunity for Canadians living with ALS to participate in clinical trials of exciting new experimental therapeutics. The first Arthur J. Hudson Translational Team Grant will provide this opportunity and lay further groundwork for future clinical trials in Canada.
Cordially,
Dr. David Taylor
Director of Research
ALS Canada
dt@als.ca
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