The Canadian Spinal Research Organization (CSRO) is very excited to announce a new partnership for one of its longest and most successful fundraising events, the Spinal Tap Charity Curling Bonspiel. The CSRO will be joining forces with Spinal Cord Injury Ontario (SCIO) for the upcoming 28th Annual Spinal Tap Charity Bonspiel on Saturday, March 30th, 2019, at the Thornhill Country Club.
The Spinal Tap has enjoyed 27 incredibly successful years, having raised $665,000 over that time. The event has provided an opportunity for participants to try curling for the first time, while also including World and Olympic Champions throughout the years. The Spinal Tap is one of the longest-running charity curling events in Canada.
With the SCIO coming on board will allow the event to grow to a new level, both on a fundraising aspect and attendance. The partnership makes sense on many levels, as both charities are dedicated to improving the quality of life for individuals living with a spinal cord injury. SCIO also brings years of experience with the sport of curling to the Spinal Tap, having hosted their own curling fundraiser in past years. We look forward to the beginning of a long, prosperous partnership that will help both charities get closer to their ultimate goals.
Clifford Voll was a man who valued independence, community, and progress. After a motor vehicle crash resulted in a spinal cord injury at his C7 vertebrae, Clifford was classified as a quadriplegic but he had almost full use of his arms and hands. This ability allowed him to use a manual wheelchair, and live independently – something Clifford valued immensely.
“There’s a point when you have this when you decide whether you live or die,” Clifford said. And his determination and persistence allowed him to not only get through a long recovery following his injury, but thrive and make lifelong friendships in the community as he took part in races and other community initiatives. “I always came in last, but it was a lot of fun” he would say of his racing days. “The beauty of it was meeting all the other wheelchair guys”.
A big part of Clifford’s belief in research for spinal cord injury curative therapies was that he personally lived through the advances that happened over the last 30 years, and he saw first-hand the differences in recovery for people who were injured decades ago as he was, and how acute treatment has progressed since then. His sister Joanne Templin says of Clifford “He believed strongly that research was going to be what made the difference for people with spinal cord injuries – and he wanted to make a difference in his lifetime. And so he donated to the Canadian Spinal Research Organization because he knew he could trust his vision to the group who has been fighting for advancements in cure research for spinal cord injury for over 30 years.”
We thank Clifford for his trust, his donation, and his commitment to a cure for spinal cord injuries – as we thank his entire family for their confidence as well.
To find out more about what the CSRO is doing to power the movement for a cure for SCI, join our mailing list for updates on research and upcoming initiatives.
Canadian/American Spinal Research Organization announces partnership with AIA Canada to address road safety through the Canadian Collision Industry Accreditation Program
(Toronto, ON – November 20, 2018) – The Canadian/American Spinal Research Organization (CSRO) and the Automotive Industries Association (AIA) of Canada are pleased to announce a partnership to address road safety through AIA Canada’s Canadian Collision Industry Accreditation Program (CCIAP). The focus of the partnership will be to promote the message of proper car repair and to improve the safety of Canadian drivers through CCIAP.
Recognizing that motor vehicle collisions are the leading cause of spinal cord injuries, the CSRO, as part of their “Paving the Way to a Cure” campaign, is partnering with automotive industry stakeholders, such as AIA Canada. The campaign acknowledges the high proportion (43%) of spinal cord injuries that are caused by motor vehicle collisions, naturally making the partnership with AIA Canada a good fit.
AIA Canada’s Canadian Collision Industry Accreditation Program accredits collision repair facilities to meet a collection of industry standards, which are contributed by participating original equipment manufacturers and other stakeholders. As automobiles become more sophisticated, the techniques required to repair them become more complex. CCIAP accreditation requires an auto body facility to successfully demonstrate compliance with accreditation standards covering core business operations, equipment and training.
“The quality of repairs and the safety of Canadians are paramount to AIA Canada and its members,” explains Jean-François Champagne, President of AIA Canada. “The automotive aftermarket plays a critical role in repairing and maintaining the 26 million vehicles on Canadian roads. Safe cars save lives and prevent tragedies such as spinal cord injury.”
“Working together to make our roads safer will have a direct effect on prevention of spinal cord injuries, which in addition to our fundraising and awareness initiatives is something we believe very strongly at the CSRO,” states Barry Munro, Chief Development Officer of the CSRO . “We’re looking forward to spreading the message of accredited vehicle repairs, which in turn will keep our roads safer for everyone.”
The Canadian Spinal Research Organization (CSRO)/American Spinal Research Organization (ASRO) are dedicated to the funding of targeted research to maximize functional recovery and cure paralysis caused by spinal cord injury. Our passion for finding a cure inspires others, builds support and expands the network of committed people; knowing each step brings us closer to our goal. www.csro.com
TheAutomotive Industries Association (AIA) of Canada is the national trade association that brings together the entire automotive aftermarket supply and service chain. AIA’s mandate is to promote, educate and represent members in areas that impact the growth and prosperity of the industry. To learn more, please visitwww.aiacanada.comand follow us onLinkedIn, Twitter, and Facebook.
The essential function of the Canadian Collision Industry Accreditation Program (CCIAP) is to accredit collision repair facilities against a collection of standards which are contributed by participating OEs and/or other stakeholders. CCIAP is run by and for the Canadian collision repair industry. The program is managed by AIA Canada, a national not-for-profit association which reaches the entire industry. Visit www.cciap.ca for more information.
On Wednesday, August 29th, 2018, the CSRO presented the Fraser Burton Corporate Champion Award to Allan Boyd and his team at Permobil in recognition of their exceptional commitment, dedication and outstanding support in helping us find a cure for spinal cord research. The award is given to a corporate partner that went above and beyond their corporate social responsibility.
The Fraser Burton award was created to honour two of our most treasured supporters and their families: Sandra Burton and Richard Fraser. Sandra and Richard’s involvement with the CSRO began following a spinal cord injury suffered by Sandra. After Sandra’s injury, the community rallied around Sandra and her family and started the annual golf tournament where the proceeds were donated to the Canadian Spinal Research Organization. Over the 12 years the tournament ran, it raised $175,000 for the CSRO.
Unfortunately, Richard too suffered a spinal cord injury later in his life. Following his injury, Richard and his wife showed even more dedication and commitment to helping the CSRO and their goal of finding a cure for paralysis. In 2004, Richard and his family hosted the Stittsville Victorian Luncheon, which grew from the first year having 32 guests in attendance to serving over 340 people. The Stittsville Victorian Luncheon raised $225,000 for the CSRO. Sadly, on April 18th 2017, Richard passed away peacefully, however, the legacy of the Fraser-Burton family has lived on.
We are eternally grateful to Sandra, Richard and their families for their commitment, dedication and support of the CSRO, and this award symbolizes our gratitude to Sandra and Richard while recognizing a current Corporate Champion.
The funds and support that Permobil has donated to the CSRO will go towards a number of our initiatives. Primarily, the funds will help us in achieving our goal to fund an Epidural Stimulation Study in Canada. The result of this study could be a cure for paralysis caused by spinal cord injury. As wheelchair manufacturers, Permobil is aware of the issues that face the spinal cord injury community. It is very uplifting that a leader in the mobility device industry is willing to show their support and give back to affected communities.
Thank you Permobil for your help in our efforts to find a cure for paralysis caused by spinal cord injury!
Permobil develops, manufactures and markets wheelchairs, seating and positioning and communication systems for people with disabilities. Their products lead in quality, performance, safety and function – all to provide their community of users with the best possible compensation for their disabilities.
The Canadian Spinal Research Organization (CSRO) wants to thank Uni-Select for their continued generosity. On July 17th, Uni-Select held their 16th Annual Charity Golf Tournament and raised $15,000 to support CSRO’s ‘Paving the Way for a Cure’ campaign. Uni-Select has now donated $280,000 to spinal cord injury research and we could not be more thankful for their efforts to help us with our cause.
There is much more to be appreciative about CSRO’s relationship with Uni-Select, beyond their donation. Every year staff members on the organizing committee of the tournament exceed expectations and we would like to give a special thank you to Lorie Caines, Kam Sukhram, Bill Hayes and the rest of the organizers and volunteers who do such a great job at putting on the event.
The CSRO created the ‘Paving the Way for a Cure’ campaign to acknowledge the high incidence of spinal cord injuries that caused by motor vehicle collisions (43%). The CSRO is uniting the aid and the interests of the Road Building, Auto Parts Manufacturers, Personal Injury Law, and Auto Insurance industries to raise $1,000,000 to fund a Canadian Epidural Stimulation study. The potential outcome of an Epidural Stimulation study could be a cure for paralysis caused by spinal cord injury. There is a tremendous toll that people living with spinal cord injury endure. It is time to find a cure; however, the CSRO cannot do it alone, it is through the support of our partner organizations such as Uni-Select that we will be able to continue to fund research to find a cure for paralysis.
Uni-Select is a leader in the distribution of automotive refinish and industrial paint and related products in North America, as well as a leader in the automotive aftermarket parts business in Canada. In Canada, Uni-Select supports over 16,000 automotive repair and collision repair shops through a growing national network of more than 1,100 independent customers and corporate stores, many of which operate under the Uni-Select BUMPER TO BUMPER®, AUTO PARTS PLUS® AND FINISHMASTER® store banner programs. It also supports over 3,900 shops and stores through its automotive repair/installer shop banners, as well as through its automotive refinish banners.
Thank you to Ferrari & Associates Insurance & Financial Services for their generous donation of $5,000 to our Paving the Way for a Cure campaign!
Paving the Way for a Cure is a campaign to raise funds for a Canadian Epidural Stimulation study. The end result could be a cure for paralysis caused by spinal cord injury. To fund one candidate, it will cost $25,000. This donation gets us one step closer!
“Improved voluntary hand function occurred within a single session in every subject tested.”
That’s the killer sentence from a new study soon to be published in the Journal of Neurotrauma. The principal investigator is our old friend, Professor Reggie Edgerton, who has been looking for ways to help people with chronic spinal cord injury since the late 1960s. I’ve met him a number of times in my own efforts to get my head around the difficulty of restoring function. In the small, intense universe of SCI research, he’s a sort of godfather — having mentored and trained a great many of the students currently on the hunt for therapies.
Until the first epidural stimulators were implanted in volunteers back in 2009 and 2010, no substantial functional recovery was happening with chronic injuries. You got back what you got back in the first year or two post-injury, and then you lived with it. Even the breakthrough moments of trials involving different kinds of cells were questionable, because they were invariably aimed at people with very new injuries.
The epidural stimulation work that I covered in my last column originated in Edgerton’s lab, but his new study is about what his team has christened tEMC, short for transcutaneous enabled motor control, also called transcutaneous stimulation.
There is no surgery, nothing implanted, no wires snaking through the body to a device embedded under the flesh. Instead, there are a couple of electrodes taped right onto the skin, not unlike the functional electrical stimulation units a lot of people use to ride stim bikes. The difference is that FES units are designed to push current directly into targeted muscle groups, while tEMC units push current toward the spinal cord itself. In that way, tEMC is just like epistim, and like epistim, it seems to work — in the sense that people do regain volitional movement.
In the fall of 2016, Edgerton published a report based on this question: If putting a stimulator into the lower back epidural space results in voluntary movement of feet and legs, would putting one into the cervical area result in the same for hands and fingers? The report included this line: “Herein we show that epidural stimulation can be applied to the chronic injured human cervical spinal cord to promote volitional hand function.”
Volitional hand function means successfully willing the hand to move. We went from reports of epistim working on the lower limbs to studies showing epistim worked on the hands, and now we have tEMC working on the hands. I got to see this for myself in May. One of Edgerton’s collaborators, Chet Moritz, Ph.D., runs a lab for SCI research at the University of Washington. He invited me to visit during one person’s tEMC session.
What a tEMC Session Looks Like
The session participant, Joe, a 60-something C3-4 quad, was undergoing follow-up work from an earlier tEMC study he’d done with Moritz. It’s the first documentation of tEMC helping a person with limited hand function regain a measure of independence.
Joe was a genial person working with a small team of grad students engaged in setting him up, monitoring his blood pressure, helping him move from place to place, giving him specific tasks to perform and measuring every scrap of data associated with the process. The electrodes were placed in the center of the back of his neck a few inches apart, one above the other.
One of the grad students operated a tablet that controlled the amount and nature of the current being sent to his cervical cord. Joe said it did not hurt at all. Did it feel like those FES units from the stim bikes? He said it was nothing like that. “It doesn’t tingle on your skin. It’s like you can feel the current moving through your spine and all the way down your legs.”
The session lasted for about an hour and a half, with plenty of rests and adjustments. Joe seemed to enjoy it, though I could see that he was getting tired by the end. In a video of Moritz discussing the initial study with Joe, you can see that while he’s not in any sense “cured,” Joe is able to do things independently that were impossible before the study. And as it turned out, Joe wasn’t an anomaly.
Edgerton’s team recruited a total of eight people with SCIs ranging from C3-4 to C7 who were 13 months to 21 years post-injury. None were vent users. Their hand function covered the range from barely a trace to measurable, but weak. The study began with three sessions of testing designed to locate a baseline function for each person. That was followed by four weeks of intervention with the tEMC, twice a week for an hour or two at a time. By the end, two of the subjects had to drop out, both for reasons unrelated to the study.
During each session, with their wrists in neutral positions and arms stabilized to prevent compensating, the subjects worked on maximizing grip strength and rhythmically opening and closing their hands. Electrodes were attached to the appropriate forearm and bicep muscles to measure the exact amount of energy their efforts were generating. All of them got stronger immediately under the influence of the tEMC — and those gains stayed with them. With each new session, their baseline grip strength improved from the previous time. Because the strength was retained, the improvements from week to week were also cumulative.
Finger dexterity also improved. Some could pinch a debit card and get it into an ATM, use a cell phone or turn a key in a lock. One of them was able to twist the cap off a water bottle. Their average maximum grip strength had more than tripled by the end of the study, but also — just as in the epistim trials — they enjoyed improvements in other quality of life measures. Sensation was better. Trunk control was more reliable. They even made gains in bowel and bladder control.
Understanding How It Works
It turns out the spinal cord is not just a collection of individual neurons all wired to other individual neurons; it’s more like a collection of wired-together collections. In my imagination, these collections of neurons that function all together — called neural networks — are sort of like the clumps of jigsaw puzzle pieces you put together off to the side when you’re building a big puzzle. They lock on to one another, and they form part of the picture, but until you find at least one place where your small clump connects to the larger puzzle, they’re just floating, useless.
The neural networks are intact in the undamaged parts of the cord below the injury, but they’re useless without a sufficient connection to the brain. The tEMC and the epistim units light them up in such a way that whatever slender link exists becomes enough.
But what if there’s no link at all? Isn’t that exactly what we mean by “complete injury?” When I was writing Don’t Call It a Miracle in 2014, I asked Lyn Jakeman, Ph.D., about this. As program director, Repair and Plasticity, at the National Institute of Neurological Disorders and Stroke, her job is to oversee research funded by the National Institutes of Health that’s aimed at finding therapies for us. She told me that it’s possible the conventional wisdom is wrong — that there’s no such thing as a complete injury. There seems to exist in every cord, no matter how badly damaged, a way to restore some connection.
I call that good news. As Edgerton’s paper puts it: “The increasing number of examples of regained/improved supraspinal control after ‘complete’ paralysis suggest that the basic biology of a spinal lesion that is presently clinically defined to be motor complete must, at least, be challenged.”
What’s even better is these gains were not only quick, they were lasting. Combined with a few months of therapy, stimulator-enabled changes didn’t go away once the study was over. We’re entering a time, at long last, when there is reason to think that even years after injury, some recovery is possible. As Edgerton said, “We have no evidence that the intervention here has been developed to its optimal potential.”
The next task is to work out what that optimal potential might be. It is too early to know for certain. It will take time and a lot of dedicated effort, but we are definitely going to be hearing a lot more about transcutaneous stimulation.
This week, the Canadian Spinal Research Organization (CSRO) received a $25,000 donation from Wawanesa insurance. This generous donation will support the ‘Paving a Way for a Cure’ campaign and Wawanesa will sponsor one subject in an upcoming study on epidural stimulation.
Our Paving the Way for a Cure campaign was kicked off last fall with an initial $25,000 donation by the Insurance Bureau of Canada (IBC) and the insurance industry has continued its support with Wawanesa’s sponsoring of 1 candidate for an epidural stimulation study.
Each candidate in the study requires $25,000 to be funded and to be part of the study – and that is the focus of our Paving the Way for a Cure campaign, with the funding of our first candidate we have achieved our first success! Thanks so much to Wawanesa Insurance for being one of the first to help us kick off this important campaign that will ultimately fund 40 candidates for this study.
Research shows that 43% of spinal cord injuries are caused by motor vehicle crashes, and through our ‘Paving the Way for a Cure’ campaign, we are uniting the aid and the interests of the Road Building, Auto Parts Manufacturers, Personal Injury Law, and Auto Insurance industries. The CSRO is aiming to fund a Canadian Epidural Stimulation study through this campaign. The potential outcome of this study could be a cure for paralysis caused by spinal cord injury. The cost to fund 40 candidates for an Epidural Stimulation Study is $1,000,000. With 40 candidates at $25,000 each, the CSRO is hoping to secure $250,000 from each associated industry.
Epidural Stimulation is the application of a continuous electrical current to the lower part of the spinal cord. The stimulation is carried out via a chip implanted over the dura (protective coating) of the spinal cord, or secured transcutaneously (above the skin). Studies that have been conducted in the United States have not only shown improvements of the motor system but also better function of the autonomic nerve system including:
Overall improvement in quality of life
Enhanced sexual function
Increased bladder control
Thanks to Wawanesa for their generous donation, 1 down 39 more to go!
Wawanesa Insurance is a Canadian mutual company owned by its policyholders. It is one of the largest property and casualty insurers in Canada. Wawanesa has a rich history dating back to September 25, 1896, when it was founded in the Village of Wawanesa, Manitoba. Today executive offices are located in Winnipeg, Manitoba, Canada.
Wawanesa delivers funding support to over 400 charitable organizations each year. In 2015 their annual corporate giving totaled $3 million – well above internationally recognized benchmarks for excellence in corporate philanthropy.
The 11th Annual MTO Reconnection Tournament was held at Cardinal Golf Club on June 11th, and it was a tremendous success. MTO employees, retirees, and other notable members of the road-building community all came out to show their support for Carl Hennum & the CSRO/ASRO. Carl, who was an Assistant Deputy Minister at the time of his retirement, worked for 40 years at the MTO. It was shortly after his retirement that he had an accident on his property, and suffered a spinal cord injury leaving him a paraplegic.
What began as fundraiser for Carl has now become an annual event, and 11 years since retiring Carl’s presence is still felt in the industry today. There were numerous accounts from people who had never met Carl but admired his work and attended to support him. In 2016, the CSRO/ASRO created the Carl Hennum Fellowship for spinal cord research and thanks to over 90 golfers and corporate sponsors, we ended up raising over $27,000 for the fellowship this year.
Since its inception, this tournament has now raised over $300,000 towards crucial research to restore function to those living with spinal cord injuries. In order to continue to grow the tournament we implemented some fantastic changes. Instead of the traditional putting contest, golfers participated in a golf dartboard competition; the winner of the contest achieved an amazing score of 121, hitting two triple twenties in the process. There was also more of an emphasis on networking and making new connections this year. Rather than a dinner, everyone gathered for a reception where industry members got together to network and celebrate the event.
We would like to thank all the golfers, corporate sponsors and especially the organizing committee for all their hard work, dedication and efforts that were put into making this a successful annual tournament!
If you want to see more pictures of the tournament head to our Facebook Page @CSROASRO