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CSRO
MAGAZINE BACK ISSUES
As President of the CSRO, I have had the great fortune of meeting
many SCI consumers and their families over the years. As our article “A
Salute to Families” will point out, the CSRO would not exist
if not for the strength and determination of the parents, siblings
and other relatives of these consumers, as well as the consumers
themselves who have grown from the support that their families have
given them. Both have been essential in helping us further our cause.
The CSRO is proud of its record of funding spinal cord research.
With the financial support of people like yourself, we have made
great advances in the quest to find a cure for paralysis. Phase 3
clinical trials of Fampridine (4-AP), the first compound to show
promise in restoring some neurological function to people with SCI,
are now almost complete. Other research projects funded by the CSRO,
such as that on Enteric Glia, are also showing promise.
However, spinal cord research is very expensive and it wouldn’t
be possible without your generous support. Please help us find a
cure for paralysis by generously donating to our organization. As
you will see in this magazine, and on our website, there are several
ways to give to the CSRO. One option that many people are not aware
of is that you can donate to the CSRO through the United Way appeal.
Although the CSRO is not a part of the United Way group of charities,
you have the option of designating a charity as the recipient of
your donation on the back of your pledge forms. We urge you to consider
the CSRO as the charity of your choice at anytime, and especially
during a United Way drive.
Thank you for your support.
Barry Munro, BA, LLB, President, The Canadian Spinal Research Organization
Families are important to all of us, but to people who have experienced
a spinal cord injury, a family’s unconditional love, support
and encouragement is essential in helping them recover from their
injury and re-integrate back into the community.
The foundation of the Canadian Spinal Research Organization is families.
The CSRO was built and is operated by people with spinal cord injuries
who were able to move on from their injury and commit themselves
to finding a cure for paralysis because of the loving support they
received from their families. In addition, we were able to grow as
an organization because of local fundraisers held by the families
of people with spinal cord injuries.
The support that we receive from families continues to be important
to the CSRO. Many of our dedicated volunteers have told us they never
would have been able to work with the CSRO if their families hadn’t
encouraged them to re-enter the workplace. To highlight the importance
of families in the lives of people with spinal cord injuries, we
asked a variety of CSRO volunteers to share with us how their families
helped make living with their injury a little easier.
On Tuesday afternoons, Andrew Fisher regularly comes to the CSRO
head office to volunteer. Andrew is a familiar sight to the staff
and he is greeted cheerfully. Soon after, he is on the phone with
retailers working to obtain prizes for CSRO events. A C5-6 quadriplegic,
Andrew was injured in a diving accident in 1993. After his injury,
his family’s love and support helped him put his life back
together and begin working towards a cure for paralysis. Their assistance
while he was in the hospital and in rehab was especially important
to him. “When you’re initially paralyzed, you are a prisoner
in your own body. For me, my family was there to help me with anything
and everything that I needed,” Andrew explains. One of the
ways his parents helped him was by sticking up for him in situations
where Andrew felt he was being intimidated by hospital staff. Andrew
now sees that “having my parents stand behind me gave me the
integrity to rebuild my self-confidence after my injury.”
Anita Kaiser, a C6-7 quadriplegic and another dedicated CSRO volunteer,
also found that to rebuild her life after her injury, the support
of her family was indispensable. She remembers fondly how, while
in the hospital after her injury, her parents helped her tackle every
problem whether it was learning to sit up or breathing. They comforted
Anita by doing simple things like holding her hand while she slept
and bringing home-cooked food to the hospital. Their unwavering support
gave her “a strength, security, warmth and love” that
she used to move on from her injury.
Carlos Gonsalves, a C4-5 quadriplegic, found the support of his family,
which includes four sisters and one brother, therapeutic as well.
Carlos was touched by the way his large family came together after
his injury to give him the physical and mental support that he needed.
The need for and the importance of family support, however, does
not end when a person with an SCI leaves the hospital. As one re-adjusts
to living in the community, this support can make all of the difference.
Take the example of Mark Woitzik, a C5-6 quadriplegic. When Mark
was injured, he had just begun his first year of university in a
town away from home. His injury meant having to move back in with
his parents following his hospitalization. His parents, however,
thoughtfully built an addition to the back of their house which gave
Mark his privacy. Mark’s parents continued to be there for
him when he needed them. When Mark returned to school, his parents
assisted him financially and helped him purchase an accessible van.
When he opened his own law firm, his parents gave him the moral and
financial support he needed to achieve this goal. His parents’ consistent
support helped Mark become self-sufficient and independent. Without
their help, he acknowledges, “I wouldn’t be where I am
today.”
Another way for families to help a loved one with an SCI is to support
the search for a cure for paralysis. This is what Ed and Heather
Durham have been doing for over a decade by volunteering regularly
with the CSRO. Their son, Ryan, was left a C4-5 quadriplegic in a
1990 diving accident. When Ryan began working with the CSRO, his
parents automatically wanted to become involved too. Their generosity
and commitment has been overwhelming.
For the past 5 years, Ed has been coming in to the CSRO head office
at least once a week to help with administrative work. Heather also
volunteers at the head office and has, along with Ed, helped Ryan
organize the Annual Spinal Tap Mixed Bonspiel for the past 12 years.
To thank them for their dedication to the CSRO, they were recently
awarded the prestigious Ralph Spadafore Memorial Volunteer Recognition
Award.
Another remarkable story is that of Gisela Krampitz. After her son
was injured in a motorcycle accident, Gisela decided to canvass door-to-door
to raise money for spinal cord research. She raised thousands of
dollars for the CSRO in order to help her son Harold one day walk
again.
William Munro, the uncle of Barry Munro who is a C5-6 quadriplegic
and President of the CSRO, also rallied to support spinal cord research.
He recommended to the Board of Directors at Trillium House – a
foundation that makes annual charitable contributions – to
make a donation to the CSRO. The foundation gave $2000 to the CSRO
and a caring uncle found a way to bring his nephew one step closer
to his goal of finding a cure for paralysis.
Like Barry, Alda Webster also believes there will one day be a cure
for paralysis. Alda is a paraplegic and the President of the Peterborough
chapter of the CSRO. She regularly holds fundraisers to raise money
for spinal cord research, and over the past year Alda raised almost
$15,000 for the CSRO. However, her fundraisers wouldn’t have
been such a success without help from her family. At every event
that Alda organized, at least four or five members of her family
were there making sure everything ran smoothly.
As these stories demonstrate, families make a huge contribution to
the well-being of loved ones with an SCI. They are also an integral
part of helping us find a cure for paralysis. For the support that
families have given to their loved ones and to the CSRO, we thank
you!
Planned Giving (sidebar)
All spinal cord injured individuals and their loved ones hope that
there will one day be a cure for paralysis. The CSRO is working hard
to make the dream for a cure a reality and Planned Giving is a creative
way that you can help us reach our goal.
Methods of Planned Giving include:
- Will Bequests
- Gifts of Insurance
- Charitable Annuities and
- Insured Charitable Annuities
Planned Giving is a great way to help the CSRO raise funds for spinal
cord research while still maintaining income for yourself, or your
spouse, or an inheritance for your children in the long term.
For more information on Planned Giving, please visit our web site
at www.csro.com, or contact the CSRO at
1-800-361-4004 or by email at bmunro@csro.com.
Once again, enthusiasm and participation generate research funds!
Spinal Tap Mixed Bonspiel On March 1, 2003 more than 70 curlers
of all ages and skill levels came together at the 12th Annual Invacare
Spinal Tap Mixed Bonspiel at Thornhill Golf and Country Club to enjoy
a fun day of curling.
This year was one of the most successful ever for the Bonspiel, which
raised over $16,000 for the CSRO and spinal cord research. Over the
past 12 years, the Spinal Tap Mixed Bonspiel has raised more than
$96,000 for the CSRO and it gets better every year.
Along with a great day of curling, participants also had the opportunity
to witness the Celebrity Wheelchair Challenge. In the Challenge,
the Canadian Wheelchair Curling Team, fresh off their Gold Medal
performance in Glasgow, Scotland, played against a team of celebrity
curlers. The celebrity curlers included Mike Harris, the 1998 Olympic
Silver Medallist and TV curling analyst; Anne Dunn, the 2003 Ontario
Champion and two-time World Senior Curling Champion; George Karrys,
the 1998 Olympic Silver Medallist; and Don Landry, morning show host
of the FAN590. The game resulted in a 7-1 win for the Canadian Wheelchair
Curling Champions in a 3-end exhibition game. Better luck next year
for the celebrity team!
The day was made complete with over $5,000 in prizes awarded to some
lucky participants. Two of the top prizes were a roundtrip ticket
for two on Via Rail and a JVC digital camera. Special thanks go to
our event sponsors: the Invacare Corporation, the Labatt Brewing
Company and Ross M. Durant Insurance Agency Ltd. Thanks again to
all those who participated in the event and supported the CSRO and
spinal cord research. We’re looking forward to the 13th Annual
Spinal Tap Mixed Bonspiel on Saturday March 6, 2004. Hope to see
you there!
A New ChapterIn recognition of our increased membership in
Southwestern Ontario, the Canadian Spinal Research Organization (CSRO)
is proud to announce the establishment of the Hamilton, Ontario chapter
of the CSRO. The chapter is closely affiliated with Dr. Rathbone’s
spinal cord research lab at McMaster University in Hamilton. Money
raised by the chapter supports Dr. Rathbone’s research being
done right there in Hamilton!
Although the Hamilton chapter of the CSRO is new, they have already
begun enthusiastically fundraising for the CSRO. Joey and Gina’s “Comedy” Wedding,
a comedy play, was held on June 13, 2003 at the Renaissance Special
Events Centre in Hamilton with all proceeds going to the CSRO. It
was great fun for all those who attended.
Special thanks to Southwestern Ontario Fundraising Co-ordinator,
Dorothy Fry and her team for planning and organizing the event.
Upcoming events include a 5 kilometre Walk/Run at McQueston Park
(Hamilton Mountain) on September 27, 2003 and a day at the races
on November 16, 2003. For more information about these events, you
can contact Karen Keller toll free at 1-800-361-4004.
The CSRO looks forward to all of the events and fundraising activities
that Dorothy and her team have in store for the next few months.
We’re glad to have you on board!
Research
for the Cure
By the Rehabilitation Research & Training Center at the
University of Alabama at Birmingham
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Have you ever wondered exactly how researchers are working towards
finding a cure for paralysis?
This article, published courtesy of the University of Alabama at
Birmingham,* outlines the various ways that researchers are trying
to help spinal cord injured individuals one day walk again.
Research for finding a cure for spinal cord injury seems to move
very slowly and this can be discouraging. This is because the spinal
cord is a very complex part of the body and researchers are continually
learning new information about the spinal cord, its cells, and how
the nerves work. In cure research the focus is on four different
areas:
- How to keep damaged nerves and cells at the site of the injury
alive
- How to replace damaged or lost tissue and stimulate the remaining
nerves to grow and regenerate
- How to find what factors inhibit or keep nerve cells in the
central nervous system from growing
- Identifying rehabilitation methods that can promote recovery
after injury
Let us look at some research goals for each of these four main problem
areas.
How can the death of nerves and cells at the site of the
spinal cord injury be prevented? The damage to the spinal
cord takes place because of the initial trauma or from swelling and
blood loss to the site that occurs for a time after the injury. The
less damage to the spinal cord, the greater the chances of recovery.
Researchers found that the use of a steroid drug, methylprednisolone
(MP), reduces swelling at the injury site. It is now the “standard
of care” given to all individuals within 8 hours after injury.
Another treatment method being studied to prevent nerve and cell
death is the moderate lowering of an individual’s body temperature
shortly after the injury.
How can damaged tissue be replaced and the remaining nerves
stimulated to grow and regenerate? Sometimes nerves in the
spinal cord are damaged permanently and unlike other tissues in the
body, can not repair themselves. Furthermore, the physical damage
to the spinal cord and its surrounding cells leaves an area that
does not allow for new growth and healing. Researchers are trying
to encourage new growth by transplanting cells or tissues at the
damaged site. Previously, when researchers transplanted adult nerve
cells, they did not work. There have been successful results however
in laboratory animals with the transplantation of fetal nerve cells
taken from an unborn animal.
Dr. Richard Fessler, University of Florida (Gainesville), Shands
Hospital, in collaboration with Dr. Paul Reier, transplanted spinal
cord tissue from an aborted human embryo to the spinal cord with
syringomyelia (a fluid filled cavity). A second patient received
the same procedure in April 1998. At 6 months post-surgery, both
patients were stable and showed MRI evidence of graft growth.
Because of the controversy in using fetal cells, researchers are
looking for other alternatives to use. Through genetic engineering
scientists can make new “cell lines” that supply nerve
cells for grafting. Cell lines have primarily been used to provide
growth factors. This use of transplanted “cell lines” is
still in the animal research stage.
Scientists have also found an area in the brain and an area in the
spinal cord, that have stem cells. These stem cells are able to divide
and produce more nerve cells or neurons. The researchers’ next
goal is to remove stem cells from a person with SCI, get the cells
to divide in the lab, and then inject them back into the spinal cord
of the person. This method would avoid problems with cell rejection.
During the past ten years, researchers discovered certain chemicals
called “growth factors.” These growth factors nourish
nerve cells and help cells grow during their developing stages. Their
goal is to find which growth factors best improve the health of the
damaged neurons and increase nerve fibre growth after an SCI.
A new drug, Fampridine-SR (4-AP), helps nerve signals pass along
a damaged area of a nerve cell, improving the nerve-impulse signal
across the site of injury. It might also help individuals with SCI
recover some sensory and motor function. 4-AP is currently in clinical
trials with humans at selected rehabilitation centres across North
America. [For more information on 4-AP, visit the CSRO’s website
at www.csro.com.]
What chemicals are present in the central nervous system
that prevent the growth of nerve cells? Researchers know
that scar tissue can form at the site of the spinal cord injury and
block nerves from growing. Now they have also identified some chemicals
that can stop nerve regeneration. The researchers are looking for
ways to help the growing nerve fibres overpower those chemicals that
inhibit their growth. They are studying ways to supply both the physical
support for the nerve cell tissue and a healthy environment for growth.
What rehabilitation methods can promote recovery after injury? Rehabilitation
is expected to be a crucial part of any cure treatment strategy.
It is unlikely that any cure treatment will result in an individual
having immediate or complete recovery of all function.
Researchers are investigating a “central pattern generator” (CPG)
in the spinal cord. The CPG is a group of nerve cells recently identified
in animals that synchronize muscle activity when stepping. There
is increased evidence that the CPG is also present in humans. Current
research is examining if this movement/exercise therapy might influence
return of function in humans. In Germany a research project has individuals
with SCI using a treadmill while at the Miami Project individuals
use a monorail suspension system. Researchers also are conducting
studies on clinically manipulating the CPG.
Conclusions There are many promising developments
in the area of spinal cord injury research. In studies for “cure” research,
many are still in the laboratory and animal testing stages. It is
likely that no one single therapy or discovery will be the “cure” for
SCI, but that multiple therapies will provide the most successful
results.
* This article was originally published by the University
of Alabama at Birmingham (UAB) Spain Rehabilitation Center. It is
re-printed here with permission and is copyrighted. You can visit
UAB’s Spinal Cord Injury Information Network at www.spinalcord.uab.edu.
Shoot
For A Cure: A Team Effort
By Chris Lomon & Sarah Higgins
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Although it didn’t show up on a scoresheet, six NHL Alumni
members who recently lent their time and support to the Shoot For
A Cure campaign still know how to provide a timely assist.
NHL Alumni President Brian Conacher, along with former NHL players
Pat Flatley, Tom Fergus, Jeff Jackson, Mark Napier and Mike Pelyk
played a big role in helping the Shoot For A Cure (SFAC) campaign
raise more than $4,000 at the Sportscard & Memorabilia Expo which
was held in Toronto on April 25-27, 2003. The six former NHLers signed
autographs at the Expo for a donation of $10 to SFAC. SFAC is a partnership
with the hockey community that raises money for spinal cord research,
promotes safe hockey and raises awareness of neck injuries in hockey.
Since its inception in 2000, SFAC has raised over $450,000 for spinal
cord research.
For Kurt Gengenbach, Director of Hockey Operations with SFAC, the
presence of the NHL Alumni members at the Expo played an integral
part in raising funds for the popular hockey-based program. “Without
the support of the Alumni, it goes without saying that we would never
have raised close to the amount of money we did,” said Gengenbach. “They
raised so much awareness for our campaign too. Every time one of
the guys was at our booth, it was our busiest time. We’re really
grateful for their time and support.”
It’s not the first time that NHL Alumni players have supported
the SFAC campaign and according to Brian Conacher, President of the
NHL Alumni Association, it won’t be the last. “We are
only too happy to support the initiative of SFAC so we may assist
in better preparing the youth of today in cautioning them as to the
cause and effects of spinal injuries,” said Conacher. “We
want to do our part as role models, to provide awareness and hopefully
see a greater prevention for the future upcoming stars.”
Along with autograph sales, SFAC also raised money at the Expo through
memorabilia and raffle ticket sales. The raffle item was a framed “On
The Pond” photo, a unique 8x10 photo from the 2000 All-Star
Game autographed by current NHLers Eric Lindros, Pavel Bure, Paul
Kariya and Jaromir Jagr.
The CSRO wishes to thank the NHL Alumni players for helping to make
the day such a success and Al Sinclair, organizer of the Expo, who
donated a corporate booth to SFAC for the three-day event. For more
information on Shoot For A Cure, you can visit www.shootforacure.org.
(sidebar) The Shoot For A Cure campaign wasn't the only big winner
on December 27, 2002 when Peter Dello won the eBay auction bid to
have two NHL referees officiate a hockey game in the location of
his choice. Peter Dello, the coach of the Maxan Drywall Flyers in
Georgetown, Ontario, gave his players a once in a lifetime opportunity
to have their hockey game officiated by two veteran NHL referees,
Greg Devorski and Kevin Pollock. “I play in a men’s league
and thought about using it for that but I thought the kids would
appreciate it more,” Dello said. “They were pretty excited.”
The two NHL referees officiated the opening game of the Georgetown
Minor Hockey Association House League Tournament. During the tournament,
Dello managed to raise even more money for the Shoot For A Cure campaign
by raffling off two pairs of Toronto Raptor tickets, a pair of Toronto
Maple Leaf tickets and a package of DVDs raising an additional $1000.
The CSRO thanks everyone involved in the event!
Filming for the television PSA with Iginla took place in Edmonton,
Alberta during the summer. Always a great sport, and willing to support
the CSRO, Iginla gave up a full day of his time to film the PSA at
an arena in Edmonton. With him were Bill Zapf and Brett Pearce, who
both sustained their injuries at a young age while playing hockey.
Premier
Partner Fundraising Profile
By Sarah Higgins
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The CSRO is pleased to announce that Johnson & Johnson Canada is
our most recent Premier Partner. It’s partnerships like this
one that allow the CSRO to fulfill its mandate.
The CSRO was proud to be a part of the annual Johnson & Johnson Canada
Company Hockey Tournament, which was held in Montreal, Quebec on
May 9th to May 11th, 2003.
Johnson & Johnson decided to use the tournament as an opportunity
to fundraise for the CSRO, making our organization the first charity
to benefit from the company’s tournament. The weekend was a
spectacular success raising an astounding $30,000 for the CSRO and
spinal cord research.
Johnson & Johnson Canada is part of the Johnson & Johnson worldwide
family, the world’s most comprehensive and broadly based manufacturer
of health care products and other related services. The Canadian
division of the Johnson & Johnson family also includes Janssen-Ortho
Inc, Johnson & Johnson Medical Products Inc., LifeScan Canada Ltd
and McNeil Consumer Healthcare, all of whom participated in the tournament.
For more information on any of these companies, you can visit www.jnj.com
or www.jnjcanada.com.
Johnson & Johnson Canada has a long history of supporting charities
and became interested in our organization through our Shoot For A
Cure campaign and the Play It Cool Prevention Program. These two
hockey-oriented programs appealed to Johnson & Johnson and they decided
that the CSRO was the perfect charity for their company’s hockey
tournament.
More than 900 Johnson & Johnson employees participated in the event,
demonstrating their hockey skills in the tournament or cheering for
their fellow co-workers. Many brought their kids who enjoyed a day
of hockey challenges and appearances by NHL Alumni Gaston Gingras
and Réjean Houle.
Barry Munro, President of the CSRO, attended the event and said “I
was overwhelmed by the generosity and true professionalism of the
Johnson and Johnson employees throughout the weekend. I can truly
call Johnson & Johnson Canada, Janssen-Ortho Inc, Johnson & Johnson
Medical Products Inc., LifeScan Canada Ltd and McNeil Consumer Healthcare
and their employees friends of the CSRO.”
(sidebar) “We are responsible to the communities in which we
live and work and to the world community as well. We must be good
citizens – support good works and charities…” -
Johnson & Johnson credo
At Johnson & Johnson, improving health and welfare of people around
the world is an integral part of our business.
Johnson & Johnson’s commitment to social responsibility is
reflected in the Johnson & Johnson credo and exemplified by a number
of key community initiatives.
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