Dear Friend,

This past February, the Canadian Spinal Research Organization (CSRO) turned 20 years old. To celebrate this milestone, we have produced this special edition 20th anniversary quarterly magazine which, in addition to highlighting the events of the past few months, reflects on the past twenty years. These past 20 years have been very successful for us. With the financial commitment of thousands of Canadians and corporations and the help of our dedicated volunteers, we have raised nearly $14 million dollars for spinal cord injury research as well as prevention and ducation programs.

The growth of the CSRO during the past two decades has been matched by the evolution of spinal cord injury cure research. Back in 1984, belief in a cure for paralysis caused by a spinal cord injury was only a faint hope. Today, the belief that a cure is not a question of IF but a question of WHEN has taken hold in the scientific and lay community with more and more funds being dedicated
to this field of research. The CSRO will continue to be a voice advocating advancements in spinal cord injury research because of its potential of vastly improving the quality of life for spinal cord injured people.

This issue of the magazine will focus on a retrospective look at the CSRO and our journey. It will include an introduction of new friends and supporters as well as a salute to those who have helped us achieve our goals to date. We will introduce you to new research funded by the CSRO as well as take a look back at past research projects. Although 20 years is a rather young anniversary for an organization, reflecting on where we began and where we are today reminds us of how fortunate we are to have been guided by dedicated SCI consumers and their family members. Unfortunately, some of those people who have been instrumental in building up the CSRO are no longer with us. It is in their honour that we dedicate this magazine.

Sincerely,

Barry Munro, BA, LLB
President
The Canadian Spinal Research Organization

On February 14, 1984 a small group of highly committed individuals decided to join the fight to cure paralysis by establishing a charity to raise money for spinal cord injury (SCI) research projects taking place around the world. Two decades later, times have changed, people have changed but the cause remains the same.

This year the Canadian Spinal Research Organization (CSRO) proudly celebrates its 20th anniversary, and while the progress of SCI research during these past 20 years has been phenomenal, this period only represents a small phase in the development of neuroscience research throughout the world.

Before World War II, most people who incurred a spinal cord injury died within a short time of their injury as a result of infections that were a secondary complication of a SCI. However, during the war the invention of antibiotics significantly reduced the lethal impact of infections for people with spinal cord injuries. As a result, the young men who came home from the war with spinal cord injuries lived much longer than their predecessors.

However, in those post-war years living with a spinal cord injury simply meant survival. People with a SCI were not expected to be active within the community, nor were they accepted as an integral part and contributor to society. Many people with a SCI struggled, and are still struggling, to escape this stereotype and a few of these people were involved in the creation of the CSRO.

With other achievements in science, people with spinal cord injuries began asking themselves and others why the medical field couldn’t develop a cure for paralysis caused by spinal cord injuries. When people started to ask this question, society, especially the medical community, was quick to respond that it was a false hope and that they should not preoccupy their time and energy with a pipedream, but to get on with living their lives. This philosophy was embedded in the medical care community and reinforced by the family and friends of many spinal cord injured people. Even to this day, there are many individuals that still advocate this position.

Fortunately for us, spinal cord injured people throughout the world became more and more persistent in asking why we could not find a cure for paralysis. And people, like Ray Wickson and the other individuals responsible for establishing the CSRO, took it upon themselves to raise money to fund the research necessary for achieving this dream of a cure. The story of the CSRO has been duplicated in many places around the world, but in 1984 we were one of the only grassroots organizations dedicated to finding a cure for paralysis. At that time, revenue was very small, but throughout the years, with the growing involvement of volunteers and then corporations, the CSRO has raised nearly $14,000,000.00 to fund groundbreaking research projects as well as prevention and education programs (Refer to graph below).

The success of the CSRO would not have been possible without the dedication of our founders, many of whom are, unfortunately, no longer with us today. Their legacy will continue to live on, however, through awards sponsored by the CSRO, such as our Ralph Spadafore Memorial Volunteer Recognition Award, The Brian Keown Fellowship and The Alda Webster Fellowship (Refer to sidebar on page 4).

Today, thanks to these individuals and countless others, such as Christopher Reeve, the first hurdle of funding SCI research, convincing people that targeted scientific research would help improve the quality of life of individuals and eventually find a cure for paralysis, has largely been overcome. Most people in the lay and scientific community now recognize that it is no longer a question of IF there will be a cure for paralysis, but a question of WHEN.

The next hurdle, raising the money necessary to fund research to find a cure for paralysis and improve the quality of life for people with a SCI, is an ongoing challenge. It is a challenge that the CSRO, with the help of friends like you, is determined to overcome.


Major Awards sponsored by the Canadian Spinal Research Organization (sidebar)

The Ralph Spadafore Memorial Volunteer Recognition Award - an annual award given to a CSRO volunteer who has demonstrated exceptional commitment and dedication in helping us find a cure for paralysis.

The Brian Keown Fellowship - presented annually to an individual in the spinal cord injury research community who has demonstrated extraordinary commitment to
finding a cure for paralysis.

The Alda Webster Fellowship - a fellowship awarded annually to a research team in cure research.

A review of our commitment to spinal cord injury research projects over the past 20 years

The driving force behind the Canadian Spinal Research Organization is to aid in the quest to find a cure for paralysis and improve the quality of life for spinal cord injured people by funding spinal cord injury research. With the support of our members and corporate partners, we have been able to fund a variety of pioneering research projects. The following is a chart of research projects supported by the CSRO over the past 20 years. The CSRO is proud of the advances and contributions made by its research teams in the search for a cure for paralysis. However, there is still more work that needs to be done in order to help the estimated 40,000 Canadians suffering from spinal cord injuries one day walk again. With your help, we will continue funding this exciting field of research in order to make the dream of a cure into a reality.

Research projects in the US and Germany yield exciting results in the continued search for a cure

When the CSRO was established in 1984, funding scientific research that would help improve the quality of life for individuals with a spinal cord injury was our top priority. This remains true 20 years later. Because we believe good research has no borders, the CSRO has funded research projects both in Canada and around the world (Refer to graph on page 6).

In this article, you will read updates about two research projects funded by the CSRO. While the findings for both projects are very exciting and cause for hope, both of these research projects still have some distance to go before they can begin human clinical trials. As always, the CSRO will keep you posted with any new findings. Read on and feel free to contact the CSRO at our general email address, csro@globalserve.net, or contact me personally at bmunro@csro.com if you have questions or require further information about either of the following studies.


GROWTH FACTORS, BRIDGES AND GENE THERAPY
By PAUL LU, Ph.D., & MARK TUSZYNSKI, M.D., Ph.D.

Center for Neural Repair, University of California, San Diego In 1994, a team of researchers at the University of California – San Diego (UCSD) began experiments in which growth factors (chemicals which help cells grow) were delivered to sites of spinal cord injury in rats. To deliver growth factors precisely to the sites of injury, techniques of genetic engineering were used. Cells were taken from the skin of injured adult rats and were genetically engineered to produce large quantities of nervous system growth factors. These growth factor-producing, genetically modified cells were then put into a collagen gel to make a “bridge”, and were placed into sites of spinal cord injury. As a result, injured connections (axons) of the spinal cord extensively grew into the growth factor-producing bridges. In 1997, it was found that this approach could result in partial functional recovery in spinal cord-injured rats with non-complete lesions. In subsequent years, the growthpromoting effects of many different types of nervous system growth factors were tested by the UCSD scientists and others. It is now known which growth factors can elicit the best degree of growth of different classes of connections (axons) in the spinal cord.

These experiments did not lead to functional recovery after complete spinal cord injuries, however, for a very important reason: connections (axons) could readily grow into, but did not grow beyond, the spinal cord injury site.

In the last year, the researchers at UCSD have attempted to stimulate growth of injured axons beyond the injury site by placing gradients of growth factors within and beyond the injury site. When this approach is combined with the placement of a growth factor bridge in the lesion site made of cells extracted from the bone marrow (“stromal cells”), significant axon growth into and beyond the lesion site has been observed.

The CSRO will support research on this project to establish whether these cells, combined with growth factor delivery within and beyond injury sites, will achieve functional recovery in spinal cord injured animals. This will help determine whether these experimental strategies might be practical for testing in humans.

L1 AND ITS ROLE IN THE RECOVERY OF DAMAGED NERVOUS SYSTEM FUNCTIONS
By MELITTA SCHACHNER
Zentrum für Molekulare Neurobiologie, University of Hamburg, Germany

When the adult brain and spinal cord (which make up the central nervous system) are damaged, regeneration of nervous system functions is limited. Factors which can prevent regeneration include: (i) glial scars which form barriers for regrowing connections among nerve cells, (ii) a low abundance of factors that help nerve cells to survive and regrow, (iii) the presence of molecules inhibiting regrowth of damaged nerve cells, and (iv) a low abundance of molecules which promote regrowth of nerve cells.

This latter explanation is consistent with the observation that L1 (a growth and nerve cell survival-promoting neural adhesion molecule) is not expressed by the glial cells of the damaged central nervous system (glial cells provide support, protection and nourishment to cells in the brain). The important question is whether L1 could help rejuvenate the damaged central nervous system of adult humans. During human embryonic development, L1 is an important molecule because it has shown to be beneficial in the formation of connections among nerve cells that are crucial for the coordinated functioning of the nervous system.

Studies by a research team lead by Melitta Schachner at the University of Hamburg in Germany found that L1 can overcome many of the inhibitory cues that prevent nerve cell regrowth in the adult central nervous system of mammals. Application of L1 to adult rats after spinal cord injury promoted locomotor recovery. In addition, L1 expressed by juvenile cells in the nervous system (stem cells) increased their migratory capacity and survival, and rescued dysfunctional neurons much more efficiently than L1 negative stem cells. L1 also acts as a navigator for cells that are crucial for making appropriate connections among nerve cells – a prerequisite for the proper functioning of the brain and spinal cord. Furthermore, they have also found that L1 enhances maturation stem cells into nerve cells and that L1 expressing embryonic stem cells exhibit enhanced survival and reduced tumor formation in comparison to L1 negative cells in the damaged spinal cord of adult mice.

Thus a simple molecule such as L1 is an important player in cell interactions not only during development of the embryo, but also in the adult nervous system that is under constraint to regenerate. The manufacturing of small compounds derived from the structure of L1 should be helpful in deriving therapeutically active molecules that would promote functional recovery in spinal cord injured individuals. These compounds are likely to best display their potential for regeneration in the context of a combined therapy, where neutralization of inhibitory cues of the central nervous system together with the enhancement of the conducive mechanisms as exemplified by L1 would form the basis for a drug design in the treatment of a spinal cord injury.

The CSRO is committed to funding Dr. Schachner’s studies and will keep you updated on her team’s results.

The second edition of the After and Beyond® Resource Manual is now available
The CSRO is very excited to announce the release of the second edition of the After and Beyond ® Resource Manual. First released in 2002, the After and Beyond ® Resource Manual is a comprehensive, in-depth source of information on issues and topics that someone with a spinal cord injury might find useful. The second edition of After and Beyond ® includes a new self advocacy section, as well as updates on information from the first edition. Also, for the first time ever, the After and Beyond ® Resource Manual will be available online at www.csro.com. The first edition of After and Beyond ® has received a very positive response from spinal cord injured consumers, their families and their health professionals and we are confident that the revised, second edition will be just as well received. If you would like a hard copy of the After and Beyond ® Resource Manual, please contact the CSRO at 1-800- 361-4004 or info@csro.com.


RESOURCE MANUAL CONTENTS

Your Injury

• The nature of the spinal cord and a spinal cord injury

Self advocacy begins with choosing and working with a strong support network. The following article provides some tips for picking one member of your support team, a personal injury lawyer.

As a person who sustained a spinal cord injury over 17 years ago, and as the President of the Canadian Spinal Research Organization, I have had the opportunity to meet thousands of individuals who have incurred a spinal cord injury. During this time, I have realized the positive impact that being your own advocate can make in the lives of people with spinal cord injuries. Nowhere is self advocacy more important than in choosing and working with your support network. Members of your support team include (among others) your doctor, attendant, physiotherapist, occupational therapist, social worker, your case manager and in many cases a personal injury lawyer. If you decide to seek damages/ compensation for your spinal cord injury, your personal injury lawyer is often the “captain” of your support team. Thus choosing the right personal injury lawyer is important in helping you become the best self advocate that you can be. The following are some guidelines to consider when seeking out a personal injury lawyer: When choosing your personal injury lawyer:

1. Ask your social worker, case manager, or another member of your support team for recommendations and/or advice.Make sure that you contact a personal injury lawyer who is a specialist in the area of personal injury and is from a reputable firm.Determine how many catastrophic cases, especially dealing with a spinal cord injury, that the lawyer has handled in the past.Determine the length of time that the lawyer has been practicing in your jurisdiction.
2. Determine how accessible the lawyer and his or her staff will be to you throughout the process of your personal injury claim.

In choosing a personal injury lawyer or any another member of your support network, you must take charge of your own future and be a self advocate. Take the time to inform yourself of the options available to you. The CSRO has produced the After and Beyond ® Resource Manual which can help you better educate yourself by providing you with information on issues and topics such as financial benefits and self advocacy. A newly revised edition of the After and Beyond ® Resource Manual is available online at www.csro.com or you can order a hardcopy by calling our office at 1-800-361-4004. Helping your legal team (sidebar)

• Record the contact information of those individuals who have witnessed your injury, and those familiar with the particulars of your injury including your health care professionals.
• Notify your employer and insurer of your injury as well as the Employment Insurance division of your nearest Human Resource Centre of Canada to ensure that your short term benefits are activated and all other government benefits and application procedures are in motion.

In 1999, the CSRO launched the Shoot For A Cure campaign. Shoot For A Cure aimed to incorporate the hockey community and solicit their support to help us raise funds for research and help educate the wider community about the incidence of spinal cord injuries in hockey. The Shoot For A Cure campaign has been a phenomenal success, raising over $750,000 in the past five years.

Within the past year, individuals within and outside of the CSRO have voiced an interest in applying the same strategic approach of Shoot For A Cure Hockey to other sports important to Canadians. These sports could serve as great vehicles for raising awareness and educating people about spinal cord injuries while raising funds for spinal cord injury research. Consequently, the CSRO is proud to launch the Shoot For A Cure Curling and Shoot For A Cure Moto-Sport campaigns.

Curling is a very popular sport in Canada and one which the CSRO has been involved in for several years through our annual curling bonspiel. Thus we feel that soliciting the support of the curling community through Shoot For A Cure Curling would be an excellent way to raise awareness about spinal cord injuries in the wider community, as well as raise funds for research.

Shoot For A Cure Moto-Sport identifies the relationship between motor-vehicle crashes and spinal cord injuries. Over one half of spinal cord injuries in Canada are caused by motor vehicle crashes. Thus, we felt it important to actively involve the automotive and moto-sport industry, through the Shoot For A Cure Moto-Sport campaign, in our quest to find a cure for paralysis. The Shoot For A Cure Moto-Sport campaign also aims to solicit the automotive and moto-sport industry’s support in educating society about the importance of safe driving in the prevention of spinal cord injuries due to motor vehicle crashes.

We are excited about these two bold new initiatives and invite you to log onto our new website at www.shootforacure.org for more information. As you will see, the website has been updated to reflect the broad mandate of our Shoot For A Cure program.


Source For Sports helps Shoot For A Cure raise $83,000!
- By Iman Abokor

In 2003, the sporting goods retailer, Source For Sports, joined the Shoot For A Cure (SFAC) Hockey campaign. Ever since that time, Source For Sports has been an enthusiastic and dedicated supporter of SFAC Hockey.

This past winter Source For Sports distributed puck sets and KEWL hats autographed by NHL players at more than 100 of their stores, donating all proceeds to SFAC Hockey. This project raised $83,000 for spinal cord research while providing hockey enthusiasts with some great memorabilia signed by their favourite players!


Shoeless Joe’s Restaurants Partners with Shoot For A Cure Hockey!
- By Iman Abokor

Shoeless Joe’s, the popular sports themed restaurant, has joined the quest to find a cure for paralysis by becoming a sponsor of Shoot For A Cure (SFAC) Hockey. Each month, Shoeless Joe’s sponsors raffle draws at dozens of its restaurants across Ontario, donating all proceeds to SFAC Hockey. In only six months, these raffles have raised $18,000 for our campaign! And starting on June 21, every time you order a kids meal at your local Shoeless Joe’s restaurant, $1 from each meal will be donated to SFAC Hockey. This will help us raise more than $50,000 for spinal cord research and education and prevention programs. For more information on Shoeless Joe’s partnership with SFAC Hockey or to find your nearest Shoeless Joe’s Restaurant, visit Shoeless Joe’s website at www.shoelessjoes.net.

The “Cathedral” of Hockey comes on board the Shoot For A Cure campaign!
- By Barry Munro

We are very pleased to announce that the Hockey Hall of Fame has become the newest strategic partner of Shoot For A Cure (SFAC) Hockey.

The Hockey Hall of Fame, the “cathedral” of hockey in Canada, has joined our campaign because they saw a natural fit between their own not-for-profit endeavours and SFAC Hockey. SFAC Hockey is a partner of the Hockey Hall of Fame in two of its premier Legend events: the Legends of the Game Golf Classic, which was held on May 26, 2004, and the Legends of the Game Fishing Classic to be held on August 22-26, 2004 at Milbanke Sound, British Columbia.

The Legends of the Game Golf Classic, at the Angus Glen Golf Club in Markham, Ontario, was a great success. Golfers had the opportunity to meet some of hockey’s greatest legends including Marcel Dionne, Rick Martin, Ron Ellis, John Bucyk and Danny Gare while raising money for the Hockey Hall of Fame and SFAC Hockey. The sold-out Legends of the Game Fishing Classic promises to be just as successful. For more information on these and future events, stay tuned!

Two popular radio personalities raise money for Shoot For A Cure
- By Iman Abokor

This past March, two radio talk show hosts decided to put their rivalries on ice…literally. On March 16, 2004 Bob McCown (Fan 590 Prime Time) and Don Landry (Fan 590 Mornings) went head to head in a team curling challenge at Bayview Country Club.

This friendly rivalry was for a good cause as all proceeds from the event went to three recipient charities, one of whom was the CSRO.

Although Team McCown put on a tough fight, Team Landry ended up winning the curling challenge 5-3. Bob McCown, however, came back to win the single shot draw to the button against Don Landry “forcing” Landry to pay $1000 to Sick Kids Hospital in Toronto. The event was really fun to watch and raised $1500 for Shoot For A Cure Curling. Special thanks to Bob McCown, Don Landry and IMG for putting on a great curling game.

Congratulations Jarome!
- By Iman Abokor

On June 10, 2004 Calgary Flames Captain, Jarome Iginla, was honoured for his extensive involvement with the CSRO and other charities with the NHL Foundation Player Award and the King Clancy Trophy. Both awards are presented annually to an NHL player who enriches their community through their active volunteer work.
Jarome has been on board the Shoot For A Cure (SFAC) campaign since day one, acting as the campaign’s spokesperson and raising the profile of the campaign by filming public service announcements and wearing our hats at several high profile events. Without Jarome’s support, SFAC could not have been as successful as it has been in raising money for spinal cord research and helping raise awareness about spinal cord injuries. Jarome is truly exceptional, both on and off the ice, and the SFAC campaign is privileged to work with him.

To view Jarome’s public service announcement for SFAC, you can visit the SFAC web site at www.shootforacure.org. To find out more about Jarome and the Calgary Flames, please visit calgaryflames.com.

Don Cherry…A friend indeed
- By Barry Munro

The Shoot For A Cure (SFAC) Hockey campaign could not have been as successful as it has been throughout the past five years without the active involvement of the hockey community. One individual who has stepped forward and has been instrumental in raising the profile of our SFAC Hockey campaign is none other than the legendary hockey figure in Canada, Donald S. Cherry.

Many who have listened to and watched Don over the years know that he has a personal concern about spinal cord injuries in hockey.

As Don has said in the past, he’s the one that “gets the letters from parents” of newly spinal cord injured people who sustained their injury during a hockey game. Don has been active in promoting our program by wearing SFAC hats during several Hockey Night In Canada appearances and other media events.

We are thankful to have Don on our team and look forward to working with Don to help prevent spinal cord injuries in hockey and raise the profile of our SFAC Hockey campaign.


Molson comes through for Shoot For A Cure hockey once again!
- By Chris Lomon

Every month, Molson donates $1000 to a charity on behalf of the player who wins the Molson Cup Award. This past March, Shoot For A Cure was once again the proud recipient of this award.

Kurt Gengenbach, Director of Shoot For A Cure, accepted the donation at Air Canada Center from Molson, and Molson Cup winner, Toronto Maple Leafs Right Winger Owen Nolan on March 2, 2004.

 

Participants, volunteers and corporate partners make CSRO fundraising events a success once again!

The past few months have been filled with several successful fundraising events sponsored by or on behalf of the CSRO. First up as the 25th Annual Richmond Hill Rotary TV Auction held on December 6 and 7, 2003. The CSRO auctioned off 300 items including a Mario Lemieux framed signed jersey which sold for $1,500. The CSRO raised an astounding $20,000, one-fifth of the auction’s total of $100,000. Special thanks to Rogers Cable for hosting the event and for all those who supported the CSRO by purchasing merchandise.

The Rotary Auction was followed by the 13th Annual Invacare Spinal Tap Mixed Bonspiel held at the Thornhill Golf and Country Club on March 6, 2004. The Bonspiel, always a successful fundraiser, didn’t disappoint raising $23,000 for the CSRO. This takes the bonspiel’s thirteen year fundraising total to an incredible $120,000! This year’s featured event was a wheelchair challenge where Team Canada, fresh off their bronze win at the World Wheelchair Championships, was up against a team of celebrity curlers lead by two-time world champion Glenn Howard and Olympic Silver Medalists George Karrys and Rich Hart. The celebrity curlers found how challenging and fun wheelchair curling can be. “That’s tough” noted Howard. “My brother (Russ) tried this last year and he found it really difficult too. These guys (Team Canada) are good.”

Team Canada beat the celebrity curlers 5-3 and in the process raised the profile of wheelchair curling, all while raising money for SCI research. Special thanks to all participants and our event sponsors: the Invacare Corporation, the Labatt Brewing Company, Ross M. Durant Insurance Agency Ltd., Therapy Supplies and Rental Limited, and Via Rail. We hope to see you at the 14th Annual Spinal Tap Mixed Bonspiel on March 5, 2005!

The bonspiel was followed by the Annual Johnson & Johnson Canada Staff Hockey Tournament held in Toronto on May 1 and 2. This is the second year that the CSRO has been the designated charity of this tournament and we were once again overwhelmed by the generosity of Johnson & Johnson, its sister companies and their staff. The event raised $34,000 for our organization through memorabilia sales, matched dollar for dollar by Janssen-Ortho. For more information on Johnson & Johnson Canada and its affiliates, go to www.jnjcanada.com.

Once again, we thank the participants, the volunteers and the corporate sponsors who made these events such a success!

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