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CSRO
MAGAZINE BACK ISSUES
After serveral years of perseverance and hundreds of thousands of invested
dollars we have fulfilled our mission of improving the quality of life
of individuals with spinal cord injuries.
This is an exciting time for the Canadian Spinal Research Organization,
and you, our supporters. It is not often that a research-based, non-profit
organization can announce a remarkable advancement in research. As you
will read in this magazine, after several years of perseverance and hundreds
of thousands of invested dollars, we as an organization have fulfilled
our mission of improving the quality of life of individuals with spinal
cord injuries through scientific research.
Fampridine, formerly known as 4-AP, is now entering Phase III clinical
studies, the final stage before it can go to market. Once this drug enters
the market, it will help a tremendous number of spinal cord injured people
throughout the world who suffer from chronic pain and spasticity, as well
as increasing function in others. This is the first time that a drug therapy
has helped improve function in chronically spinal cord injured people.
We are proud of this accomplishment, and would like the thank you, our
supporters, for helping this come true.
The success of Fampridine does not come without sacrifice. Many volunteers
have helped raise funds and committed their time to the organization for
the past 15 years to help make this drug treatment a possibility. It is
with great sorrow that we have to announce that one of our most dedicated
volunteers, Brian Keown, passed away in February of this year. Brian's
legacy has been established and he will not be forgotten.
As you read on, you will see that we enjoy continued support from our corporate
partners through both our Shoot For A Cure campaign and through our education
and awareness programs.
On behalf of the CSRO, I would like to thank all of our supporters for
helping us get to where we are today.
Barry Munro, BA, LLB
President
The Canadian Spinal Research Organization
CSRO
Research - The search for a cure enters a New and
Exciting Phase From The Bench to The Bedside
By KATHRYN A. DAVIS & RAY WICKSON
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As many of you are aware, the CSRO has been pursuing the goal of bringing
Fampridine-SR (4-AP) to the spinal cord injured population for many years.
The CSRO and Acorda are pleased to announce the beginning of Phase 3 clinical
trials of Fampridine-SR.
Opportunity to Participate in Phase 3 Clinical Trials There are approximately
70 sites in Canada and the United States scheduled to take part in the
Phase 3 clinical studies of Fampridine-SR. In Canada, there are thirteen
sites scheduled to participate.
Participants need to meet the following initial criteria:
- Are between 18 and 70 years of age
- Have a chronic, incomplete SCI
(at least 18 months post-injury)
- Have moderate to severe spasticity
- Have no history of seizures
If you think that you meet the criteria listed above and are interested
in being considered for participation in these studies, call the TOLL-FREE
information line at 1-866-206-2322, weekdays from 9 AM to 7 PM (EDT). Please
note that calling the toll-free number does not guarantee participation
in the studies.
A Brief History - The CSRO believes any medical advancement
depends on three groups working together: scientists for
the initial research and development; clinicians for the
clinical trials required for regulatory approval; and private
industry for money to bring a drug to market.
The Scientific Contribution
Andrew Blight, Ph.D., a neuroscientist, pioneered the therapeutic application
of fampridine in spinal cord injured (SCI) animal models at New York University
in New York City, Purdue University in West Lafayette, Indiana, and later
at the University of North Carolina at Chapel Hill. Dr. Blight also participated
in the original human clinical trials, which were conducted in Canada.
The principle investigators of the clinical studies were Dr. Robert Hansebout
at St. Joseph's Hospital in Hamilton, Ontario and Dr. Keith Hayes at Parkwood
Hospital in London, Ontario. The study conducted by Dr. Hansebout showed
positive results and these results were peer reviewed and published. This
was a very important step in the process to establish the fact that therapies
can improve the physical condition of spinal cord injured persons years
after the injury.
The CSRO wishes to acknowledge the efforts and participation of the Center
for Paralysis Research, Veterinary School of Medicine at Purdue University,
Dr. Richard Borgens, Director. Dr. Borgens and his staff were integral
to the basic science with fampridine.
The Clinical Contribution
The first human clinical study of a spinal cord injured person funded by
the CSRO was done at Parkwood Hospital in London, Ontario in 1990. The
next studies were conducted in Hamilton, Ontario at St. Joseph's Hospital
in 1992. Since that time, further studies have been conducted at these
sites. Without the dedication of Drs. Hansebout and Hayes, this project
would probably still be in the planning stages.
The Private Industry Contribution
In March 1995, Dr. Ron Cohen founded Acorda Therapeutics, Inc. to develop
therapeutic products for spinal cord injury and other central nervous system
disorders. Headquartered in Hawthorne, New York, Acorda is a privately
held biotechnology company and was the first company to focus on the development
of therapies to restore function in individuals with chronic, or long term
SCI.
The CSRO entered into a licensing agreement with Acorda in 1995. Under
the agreement, Acorda obtained the rights to develop fampridine from the
CSRO for therapeutic use in SCI. In January 1997, Acorda entered into another
licensing agreement with Elan Corporation of Athlone, Ireland, to develop
an oral, sustained release formulation, Fampridine-SR, for treatment of
SCI. Elan manufactures and supplies Fampridine-SR to Acorda. It is this
sustained release (SR) formulation that is being used in the Phase 3 studies.
By keeping its focus on SCI, Acorda has recruited a team of world-renowned
academic laboratories and scientists, one of whom is Dr. Andrew Blight,
now Executive Vice President for Research and Development at Acorda. Acorda
has continued to lead the clinical development of Fampridine-SR, including
establishing a network of leading academic SCI rehabilitation centres to
conduct the company's clinical trials.
The CSRO highly values the long time collaboration with Acorda, Dr. Cohen
and Dr. Blight, and continues to develop working relationships with other
scientists, clinicians, and companies that can assist in the efforts to
increase neurological function for people with SCI.
How Does Fampridine Work?
Fampridine is the first compound to show promise in restoring some neurological
function to people with SCI. So how does it work?
Most people with a spinal cord injury have some axons, or nerve processes,
that survive the injury. However, these surviving axons are often damaged
and lose part of their myelin, which is the insulating sheath that permits
electrical impulses to be conducted down the axon. When the myelin is damaged
("demyelinated"), large numbers of potassium channels are exposed and "leak" potassium
ions, causing the axon to "short circuit," much like electricity in a wire
from which the insulation has been stripped. Even though a demyelinated
axon is alive, it cannot transmit sensory impulses or motor signals from
the brain to their ultimate destinations, and the individual effectively
loses the use of the axon.
Fampridine counteracts the effects of demyelination. Fampridine-SR restores
the ability of damaged nerves to conduct electrical impulses in people
with chronic SCI by blocking exposed potassium channels in demyelinated
axons. The sustained release formulation also allows a gradual release
of fampridine over a prolonged period of time and maintains a more constant
level in the blood.
Currently, there is no approved therapy that improves neurological function
for individuals with chronic SCI. However, participants with chronic SCI
in Phase 2 clinical trials of Fampridine-SR have shown improvement in a
variety of impaired neurological functions, including reduced stiffness
or spasticity, increased bladder and bowel control, and increased sexual
function. The most common side effects observed with Fampridine-SR treatment
have been pain, paresthesia (tingling, prickling, or creeping of the skin),
insomnia, dizziness, constipation, and nausea. When appropriate doses are
administered, side effects are reported as mild to moderate, similar to
those reported when taking a placebo.
Where is Fampridine-SR in the Approval Process?
The regulatory approval process for Fampridine-SR has been a complex process.
The "typical" process outlined in the sidebar on this page represents the
average amount of time it takes a drug to go from the initial R&D phase
to FDA approval. Recently Acorda Therapeutics completed Phase 2 trials
for Fampridine-SR and is now enrolling volunteers in two Phase 3 clinical
studies. We believe a brief history of the process - including information
regarding effectiveness and safety issues - will be valuable to anyone
considering participating in the Phase 3 studies.
Initial Research and Studies
Initial research and studies on fampridine were conducted in the late 1980s
and early 1990s at various centres across Canada and the United States.
The initial research, as described above, was crucial in bringing Fampridine-SR
to the point it's at now. Without the research of Drs. Hansebout, Blight,
Hayes and others, Fampridine-SR would not have become such a promising
drug therapy for the spinal cord injured. The trials they conducted were
fundamental in beginning the approval process and the first steps in bringing
Fampridine-SR to the consumer.
Regulatory Approval of Fampridine-SR to Date
To start the more rigorous and official FDA approval process and preclinical
development, Acorda submitted an Investigational New Drug application (IND)
in 1995.
Phase 1. Acorda began Phase 1 trials using its own formulation of fampridine
with four subjects in 1996. The trials were stopped almost immediately
when Acorda entered into an agreement with Elan Corporation to develop
an oral, sustained release formulation, Fampridine-SR, for treatment of
SCI. Because this SR formulation had already been successfully tested for
safety, toxicity, and significant side effects in Phase 1 studies for MS,
Acorda could take the results, plan the next steps, and move on to larger
Phase 2 studies.
Phase 2. From 1997 through 2001, two Phase 2, double blind, placebo-controlled
studies were conducted in multiple U.S. centres. Clear, positive, quantitative
trends were observed in reduced stiffness or spasticity, increased bladder
and bowel control, and increased sexual function. In addition, many participants
and clinicians believed that further improvements were possible "if they
could only have more." The benefits were consistent with previous experience
and increased Acorda's confidence in moving forward. To date, Fampridine-SR
has been studied in more than 500 people with chronic SCI or MS.
Pharmacokinetic Studies. At the same time that Phase 2 trials were conducted,
pharmacokinetic studies required by the FDA were conducted in Canada. Pharmacokinetic
studies are open label studies to determine the effect of an investigational
drug on blood levels, safety issues, and dosage levels. In an open trial
study, both investigators and participants know that each participant is
receiving the drug and not a placebo.
Moving into Phase 3. In meetings at the end of 2001 and the beginning of
2002, Acorda reviewed the Phase 2 study results with the FDA. A potential
path to approval by the FDA, including plans for Phase 3 clinical studies
is in place.
Canadian HPFB Approval. Acorda has also submitted its previous Phase 1
and Phase 2 protocols and study results to the Health Products and Food
Branch of Health Canada (HPFB). At the end of Phase 3, Acorda will again
send results to HPFB and apply concurrently for approval by both HPFB and
FDA at that time.
Phase 3 Clinical Study Enrolment Acorda Therapeutics is now enrolling a
total of 360 participants in two Phase 3 clinical studies of Fampridine-SR
in Canada and the United States. The outcome of these trials will determine
how quickly Fampridine-SR will be available to the general public. Acorda
anticipates that the trials will be completed in 2003. The company will
then complete its analysis of the study results and submit regulatory applications
to Canada and the United States. In Canada, full approval by Health Canada
and the HPFB can take between one and two years before the drug is available
on the Canadian pharmaceutical market. FDA review could take from six to
twelve months after a New Drug Application (NDA) submission.
The upcoming Phase 3 clinical study will be double blind and placebo-controlled,
which means that some individuals enrolled in these studies will receive
a placebo, or sugar pill, for the duration of the study. Neither the investigators
nor the study participants will know who is receiving the drug and who
is receiving a placebo until the end of the study.
Although these trials will assess other functions such as bowel, bladder,
and sexual function, the primary focus will be on how well Fampridine-SR
can reduce spasticity in individuals with chronic SCI. Even though different
SCI injuries can cause reduction in a variety of neurological functions,
spasticity appears to be one of the more common functions that can be adequately
measured and compared in a large trial. In addition, with spasticity affecting
up to 75% of people with chronic SCI, the trials will focus on one of the
largest unmet needs of individuals with SCI.
The story of the development of a drug therapy for people with SCI continues,
from the CSRO's unwavering vision and determination to the many contributions
during the past two decades from scientists, clinicians, and private industry.
We are grateful for all the volunteers who are interested in participating
in this process. It would, of course, be impossible to develop new therapies
without you.
When a person suffers a spinal cord injury the normal flow of nerve signals
below the level of injury is interrupted and those signals may not reach
the reflex centre of the brain. Because the body's reflex centres are unable
to work together to moderate the body's response to signals, the reflex
centres in the spinal cord attempt to moderate the response. Because the
spinal cord is not as efficient as the brain, the signals that are sent
back to the site of the sensation are often over exaggerated. This overactive
muscle response is also known as spasticity.
Most individuals with SCI experience some level of spasticity. Therefore,
there is a significant need for spasticity treatments.
Approximately 75% of SCI patients experience spasticity, which can be stiffness,
spasms and/or pain in the muscles. Spasticity often interferes with activity
of daily living and in some cases interferes with other activities such
as sexual activity, sleeping changing position, sitting or transferring.
Most current treatments for spasticity are muscle relaxants that reduce
muscle spasms by decreasing muscle tone and interfering with the ability
of muscles to contract. The most commonly reported side effects associated
with muscle relaxants are weakness, sedation, and fatigue.
The Canadian Health Products and Food Branch (HPFB) and the Food and Drug
Administration (FDA) ensure that all drugs and related treatments in Canada
and the United States are safe and effective. The HPFB and FDA will not
consider or approve the use of a new substance until after completion of
studies with scientifically controlled and analysed data. New drug therapies
must pass through different stages in order to be approved for use in Canada
and the United States.
The FDA Approval Process
- Preclinical
Studies: Crucial laboratory and animal tests that are
the key to underpinnings of all medical research and
advances in clinical care. Phase I Trials: Small studies
usually involving 10-13 human subjects. They are primarily
designed to detect any serious side effects. Drug development
stops here is scientists notice any significant side
effects. These studies are usually "open label," meaning
all participants know what drug they're taking; all subjects
actually receive the drug. Phase II Trials: Involve 30-150
subjects and are designed to test a drug's effectiveness
in a somewhat preliminary fashion. These are frequently "double
blind", meaning some participants receive the drug while
others do not; neither subjects nor researchers know
which patients receive the drug. Phase III Trials: Are
pivotal-a successful outcome will normally result in
FDA approval for use of the drug in any patient with
the disease. These studies generally involve 250-500
participants. The trials are always double blind and
often occur simultaneously at a number of centres. This
phase takes two or more years to complete. Phase III
trials must demonstrate that the treatment if effective
and safe.
- Post-marketing
Stage: Occurs when the drug is released for general use.
This phase usually involves several thousand patients
and is "open label." With this larger number of individuals,
researchers may see side effects not detected in Phase
III trials. Rare side effects do not attract notice until
many individuals receive the therapy.
Phase I, II and
III trials require a substantial commitment from physicians
and centres. Most studies require that participants regularly
report to clinical centres for safety evaluations and tests
to determine effectiveness.
From MS Quarterly Report, Volume 14, Number 3.
Explanation
of Fampridine-SR Mechanism of Action Figures 1-3.
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Figure 1: Undamaged Nerve Cell. A nerve cell has axons that are protected
by a fatty substance called myelin. Myelin allows the electrical signal
from the brain to be conducted along the nerve.
Figure 2: Demyelinated Axon. In spinal cord injury, parts of the myelin
sheath are damaged or lost, much like a wire whose insulation has been
stripped off. When an axon is demyelinated, potassium leaks out causing
the axon to short-circuit. The axon can no longer transmit motor or sensory
impulses.
Figure 3: With Fampridine-SR. Fampridine-SR helps prevent the axonal short
circuits by blocking channels in the axon that leak potassium ions. With
the channels blocked, the electrical signals can continue past the damaged
section of the axon. This is what accounts for some of the restored neurological
function that we see in SCI patients taking Fampridine-SR.
Shoot
For A Cure
BY SARAH HIGGINS & CHRIS LOMON
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The CSRO is pleased to report that the Shoot For A Cure campaign is moving
along quite well. As you will see in this issue, our staff, volunteers
and partners have been very active in promoting the Shoot For A Cure campaign,
which enables us to raise funds for research to find a cure for paralysis.
The hockey community has been very instrumental, not only the players,
but also other sectors of the hockey world, in helping us Shoot For A Cure.
Partners like IMG Hockey, the Toronto Maple Leafs, Universal Studios and
Molson Canada, have all helped us make Shoot For A Cure the success that
it is.
Captain's Corner "Captain's Corner," a project implemented
by Toronto Maple Leafs' Captain Mats Sundin, became one of
the CSRO's most exciting events over the past year. Beginning
in March of 2001, Travis Colley-Zorrilla experienced the
first of seven nights the CSRO had with the "Captain's Corner" at
the Air Canada Centre.
"It's obviously something we truly wanted to do," says Sundin. "Knowing that
Travis enjoyed himself is all that really matters. I'm just happy to be in a
fortunate position to help out."
"Captain's Corner" is fully wheelchair accessible, and gives mentally, physically
and socially challenged children from the community the opportunity to attend
Leaf home games. Many of these children, like the ones brought in by the CSRO,
would never have the chance to experience a hockey game. Through this opportunity,
not only do they get to see the game, but are also treated like royalty.
To make the magical nights possible, individuals, corporations and other
community partners sponsored the nights in Sundin's "Captain's Corner." The
CSRO used the box for spinal cord injured children and other children in
the community. Among the sponsors for the nights were the Wasaga Beach
Lion's Club, the Uxbridge Rotary Club, Mark Woitzik, Carlos Gonsalves,
Jeff Neiman and others.
The CSRO would like to thank the Toronto Maple Leafs and IMG for the opportunity
to take part in such a wonderful cause. All the money raised from the seat
sponsorships went to research for a cure for spinal paralysis. The CSRO
was proud to be a part of this season's "Captain's Corner."
Molson Cup Every month, Molson donates $1000 to a
charity on behalf of the player who wins the Molson Cup Award
in Toronto and this past March the CSRO and the Shoot For
A Cure (SFAC) Campaign were the lucky recipients. On March
12, 2002, President Barry Munro accepted a donation on behalf
of the CSRO and SFAC from February's Molson Cup winners Mats
Sundin and Tomas Kaberle.
Slap Shot 2 Event The CSRO and Universal Studios Canada
recently gave hockey fans an evening they'll never forget.
The two paired up for the premier of the much-anticipated
sequel to the 1977 hockey classic "Slap Shot" on March 25,
2002 and to raise money for the CSRO's Shoot For A Cure (SFAC)
campaign. The event, held at the Hockey Hall of Fame in Toronto,
was a huge success and raised close to $30,000 for SFAC.
The Hanson brothers, present for the event, made the night come alive.
Dressed to the nines in matching white tuxedoes and pastel cummerbunds,
the Hanson's thrilled all those present with their original sense of humour.
"The efforts of SFAC are simply amazing," says Janet Billett, Senior Vice President,
Marketing, Universal Studios Home Video Canada. "To see how hard they work at
promoting their message is wonderful. They should be commended for their efforts."
"Things are really taking off for us and we've really broadened our scope. There
are a lot of exciting opportunities that we are working on and I believe the
best is yet to come for SFAC," says Barry Munro, President of the CSRO.
The "Slap Shot" event has led to another exciting opportunity for the CSRO
and the SFAC campaign. On the tails of the event, the CSRO connected with
another partner, Nextwave Collectibles, to continue raising finds for SFAC.
Nextwave Collectibles, one of the best selling sports and entertainment
art makers in the world, is contributing 5% of sales on all "Slap Shot" related
merchandise to SFAC. The items are available at www.collectnextwave.com
or by calling 780-413-4524.
The CSRO and Universal Studios Canada were proud to be a part of such an
important and successful event, and the CSRO looks forward to the new partnership
with Nextwave Collectibles. All money raised for the SFAC campaign goes
to the CSRO's main initiative, finding a cure for spinal paralysis.
Good times for a good cause…Once again the CSRO was pleased to be
a part of many wonderful fundraising events over the past few months. It
is events like these that allow research to find a cure for spinal paralysis
to continue. Thanks again to all of our volunteers!
Richmond Hill Rotary Auction Once again, the CSRO
was proud to be a part of the Rotary Auction, held over the
weekend of December 8 and 9, 2001. The auction, as always,
was an incredible success, raising over $15,000 for the CSRO
and spinal cord research. In fact, due to the overwhelming
support the public showed for the CSRO, the Rotary Auction
reached the $100,000 mark for the first time.
The auction, which takes place every year just in time for the holiday
season, is broadcast on local Rogers cable stations. Twelve different charities
participate in the auction every year, and this was the CSRO's sixth year.
Be sure to watch for us next year!
Shorcan Golf Tournament Nestled among the high-rises,
sports arenas and the CN Tower, players took to the tees
this past August 23 to raise funds for the CSRO.
Held at the City Core Golf Course in downtown Toronto, the annual Shorcan
Golf Tournament was a complete success. Shorcan Brokers Limited provided
a great day of golf with numerous celebrities and raised over $16,000 for
the CSRO.
Among those present for the tournament were Cory Cross (Toronto Maple Leafs),
Bryan Muir (Colorado Avalanche), Jamal Mayers (St. Louis Blues), Syl Apps
Jr. (Former NHLer), Peter Zezel (Former NHLer), Nick Kypreos (Former NHLer),
Gord Stellick (The FAN 590), Kathryn Humphreys (CITY-TV), and Scott McKay
(Leafs' Equipment Manager).
The gorgeous weather and great setting all added to the day, which motivated
plans for this year's up-coming tournament. It will once again be held
at City Core Golf Course in Toronto.
Spinal Tap Mixed Bonspiel Another year, another successful
Bonspiel! The 11th annual Spinal Tap Mixed Curling Bonspiel,
sponsored this year by Labatt Canada, fell on March 2, 2002
this year. Once again it was held at the Thornhill Golf and
Country Club. This year's event was even more successful
than the last, raising almost $16,000 for the CSRO and spinal
cord research.
Twenty-four teams participated in this year's Bonspiel, a day enjoyed by
all. Curlers and spectators were treated to an appearance by George Karrys,
an Olympic Silver Medallist at the 1998 Nagano Olympics, who emceed the
event. Plans are already underway for the next bonspiel, scheduled to take
place on March 1, 2003. Get your team in early to ensure you don't miss
out on the fun!
The CSRO held its Annual General Meeting was held on June 10, 2002 and
the Board of Directors for 2002-2003 was elected. We're pleased to announce
that this year's Board of Directors consists of another team of highly
dedicated individuals.
When most people think of volunteers, they think of events and fundraisers.
We often forget that not-for-profit organizations are also governed by
volunteers. The members of the CSRO's Board of Directors contribute hundreds
of hours every year to ensure that the organization is carrying out its
charitable purposes and activities. We rely on the expertise of the Board
members and are thankful for their continued time and dedication.
Graeme Aitkin, Chair Mr. Aitkin is the Canadian Affairs Representative
for the International Union of Bricklayers and Allied Craftworkers.
Michael Dorman, Treasurer Mr. Dorman is the President of Therapy Supplies
and Rental Ltd.
Laurie Grant, Secretary Ms Grant is a tenured faculty member and Program
Head with the School of Business at the British Columbia Institute of Technology.
Ray Wickson, Director Mr. Wickson is the Director of Research with the
Canadian Spinal Research Organization and the President of Neurological
Technologies.
Steven McArthur, Director Mr. McArthur is the principle of McArthur · Vereschagin,
a management side labour and employment firm.
Andrew McTaggart, Director Mr. McTaggart is President and principle shareholder
of Adler Technologies.
CSRO
Says "Goodbye" To Another Dedicated Volunteer
By BARRY MUNRO
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It is with great regret that I convey to the membership that we have lost
yet another consumer dedicated to research. In February past, Brian Keown,
a Director of the CSRO passed away due to cancer.
I met Brian Keown as a fellow consumer and spinal cord injured person during
my rehabilitation at Lyndhurst Hospital in Toronto in 1987.
Together, we were active on the Patient Council, where Brian exhibited
his leadership at an early stage after his accident. I had the good fortune
of working with Brian, as we became involved with a newly established charity,
the Canadian Spinal Research Organization (CSRO).
Brian became a dedicated Board member of the CSRO in 1988 and was active
with the organization until his death this year. With Brian's involvement,
the CSRO grew into a large charity that has generated over $10 million
in research in the last 15 years. Brian was a driving force and leader
with the organization and a strong advocate for consumer rights for research
to find a cure for spinal cord injury.
In my opinion, Brian exemplified what a true volunteer should be and he
will be greatly missed.
The CSRO's Board of Directors wanted to ensure that the legacy of Brian
Keown would be carried forward in the research community and so a fellowship
has been created in Brian's name.
Each year, $40,000 will be awarded to an individual who is dedicated to
finding a cure for paralysis. This year's recipient, Shuciu Jiang, is working
under the supervision of Dr. Michel Rathbone at McMaster University. In
this manner, Brian Keown's name will always be associated with the goal
of finding a cure for paralysis.
The CSRO is proud to announce a Premier partnership with a trusted member
of the legal community, the law firm of Falconeri, Strype.
Falconeri, Strype, Barristers and Solicitors are committed to championing
the cause of those among us who have been injured. Falconeri, Strype takes
pride in their litigation skills and the ability to stay abreast of medical
advancements and changes that affect the diagnosis and treatment of traumatic
injuries. For the past few years, our partnership has been a solid one
and this year we are proud to announce the commitment of a Premier sponsorship
with Falconeri, Strype.
After
and Beyond Spinal Cord Injury Journal
By SARAH HIGGINS
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Dealing with the realities of a spinal cord injury (SCI) is never easy.
At the CSRO, we are aware of the many difficulties one encounters following
a SCI, as many here have had similar experiences. For this reason, the
CSRO produced the After and Beyond® Spinal Cord Injury Journal.
After and Beyond® is a guide to help the individual,
family and friends sort through the early part of the initial
SCI experience. The goal is to make it easier to understand
what is happening and to voice any concerns, needs and wishes
in a way which will help everyone move beyond this difficult
time.
The journal, available from the CSRO head office free of charge, is a first
step in the process of understanding everything that someone with a SCI
will go through and undertake during acute care. It is our hope that the
journal will be your guide through acute care, on to rehabilitation and
back into community living.
After and Beyond® provides basic information about
spinal cord injury and also explains some of the medical
terms you may hear. For many people, the language used to
describe spinal cord research and the injury is a new world
that brings about many questions. In order to help the consumer,
their family and friends understand the terms and phraseology
surrounding spinal cord injury and research, a glossary is
included in the journal.
The journal will also help you gather information about caring for your
injury and serve as a link to other resources such as Life After Spinal
Cord Injury, produced by the Canadian Paraplegic Association.
It can be used to keep a personal record of events and a place to keep
important information like questions and answers; concerns, feelings and
experiences; evidence of progress; important names such as people involved
in your case; dates, tests, treatments, results and future appointments.
Because the CSRO also realizes that the effects of an SCI last beyond the
first few weeks, a second resource manual is in the works to bring understanding
to some of the things that will affect someone with a SCI for the rest
of their life.
This resource manual will be available in September and will deal with
topics such as bowel and bladder management, skin care and re-entering
the workforce. The manual is for consumers, their friends and family and
anyone who needs additional information about SCI.
Excerpts from the After and Beyond® Spinal Cord Injury Journal
are available on the CSRO web site at www.csro.com in the spinal information
resources area.
If you have further questions or would like a copy of the journal sent
to you, please contact us through our web site or by calling 1-800-361-4004.
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