We had a great turnout and many smiling faces at the Walk & Roll last weekend. We loved seeing all the different rollers. Tandem bike, the new clip on steering device, the crew who could do spins and wheelies. It was the coolest event!
Our main sponsor Todd Stabelfeldt brought water bottles, homemade cookies and former sonic Detlef Schrempf. Our board member Tony Choppa of OSC and the Stritmatter Kessler firm helped defray the cost of putting on the event. Christopher & Dana Reeve Foundation provided the t-shirts and helpful advice.
Our main donors were the fabulous team Shannon Moore and the MR Pattison Foundation (a cure is coming).
This event would not have been possible without the work of our Walk & Roll Director Cristina Greig, our Interns Nick Lannoye and Hailey Thomassen. Volunteers Alysha Greig, Michele Magnuson, Reid Backstrom. And all of you who raised money and came to walk & roll!
For more photos please visite our facebook page: spinal cord injury association of washington.
Hello everyone! I am happy to announce that I am
officially an intern at SCIAW. As soon as I was asked to become involved in the
association my partner in crime, Nick Lannoye, and I have been working quite
hard to spread the word about our upcoming Rock & Roll event. We set out to
post flyers around the neighborhoods only to realize how difficult it can be
for two people to cover so much territory. After talking with quite a few
companies in hopes of finding a sponsor and or donor and being turned down both
sympathetically and bluntly, we have been doing our best to keep our spirits
high and attempt to contact some more local and smaller businesses.
I wish I could have become involved in this association
sooner, because unfortunately I will be taking my trek back up to Bellingham to
start out my junior year at Western Washington University in two weeks. Despite
going back to school, I will continue to work toward making our upcoming event
as successful as possible. So far, I am glad to be a part of this growing
association and hope to continue to establish more connections and spread the
word further up in the northern parts of Washington.
My name is Nick, and I am an intern here at SCIAW. I have been interning for a
month and a half now, and it certainly has been a unique experience that I will
gladly share with you.
Before I begin, I’d like to say that I am not the greatest writer in the world.
I got a C in English class, but then again, I wasn’t passionate about that
subject like I am when it comes to helping people with spinal cord injuries. I
thought this opportunity would be a perfect fit for me, since my mother
suffered a spinal cord injury before I was born while working as a baggage
handler for an airline. But since this happened before my birth, I always
overlooked it to a certain degree, unaware of the challenges that she faced on
a daily basis. Unlike most people who have suffered a spinal cord injury, my
mother is not confined to a wheelchair, and she can walk, but often needs a
cane during her flare ups. I hope that this internship will help me learn about
her difficulties along with the other spinal cord injury victims across the
Initially there were three interns, but two of them dropped out which puts me
in the spotlight, but I am up for the challenge. It all began with posting
flyers for our event throughout several neighborhoods, primarily in coffee
shops and other stores with heavy foot traffic. But now the focus has switched
to acquiring support from businesses and organizations.
With our Green Lake Walk & Roll coming up in less than two months, it is
now crunch time, and we are currently seeking sponsors to help fund our event.
However, we learned just last week that many businesses require anywhere
between three months to a year’s notice in advance to sponsor an event such as
ours. With that in mind, we are striking out with many local companies for
sponsorship or donations. But while this puts a slight damper on my spirits, it
is valuable information for our next event! Hopefully we will now be much
better prepared for the 2nd annual walk and roll!
I have a lot of ideas that I hope to incorporate into our upcoming event(s),
and I’ll let you know if any of them are used, and I will keep you updated with
After months of hard work, filling out forms, checking and double-checking…. and after much nail-biting, it’s official: SCIAW just received notice from the IRS that it has been granted 501(c)(3) tax exempt status.
Mary Ann Baltich dedicated long hours to this project, and did it so perfectly that the application was granted on the first submission.
SCIAW, as a non-profit tax exempt charitable organization, depends fully on donations of time, energy, and money. Thank you for making us possible!
Breaking News Flash from the Christopher & Dana Reeve Foundation:
Paraplegic Man Stands, Steps with Assistance
and Moves His Legs Voluntarily
Regimen of Epidural Spinal Cord Stimulation Plus Extensive Locomotor Training
“A Significant Breakthrough;” Results Published Today in The Lancet
(LOUISVILLE, Ky. – May 19, 2011) A team of scientists at the University of Louisville, UCLA and the California Institute of Technology has achieved a significant breakthrough in its initial work with a paralyzed male volunteer at Louisville’s Frazier Rehab Institute. It is the result of 30 years of research to find potential clinical therapies for paralysis.
The study is published today in the British medical journal The Lancet.
The man, Rob Summers, age 25, was completely paralyzed below the chest after being struck by a vehicle in a hit and run accident in July 2006. Today, he is able to reach a standing position, supplying the muscular push himself. He can remain standing, and bearing weight, for up to four minutes at a time (up to an hour with periodic assistance when he weakens). Aided by a harness support and some therapist assistance, he can make repeated stepping motions on a treadmill. He can also voluntarily move his toes, ankles, knees and hips on command.
These unprecedented results were achieved through continual direct epidural electrical stimulation of the subject’s lower spinal cord, mimicking signals the brain normally transmits to initiate movement. Once that signal is given, the research shows, the spinal cord’s own neural network combined with the sensory input derived from the legs to the spinal cord is able to direct the muscle and joint movements required to stand and step with assistance on a treadmill.
The other crucial component of the research was an extensive regime of Locomotor Training while the spinal cord was being stimulated and the subject suspended over the treadmill. Assisted by rehabilitation specialists, the individual’s spinal cord neural networks were retrained to produce the muscle movements necessary to stand and to take assisted steps.
Leading researchers on the 11-member team are two prominent neuroscientists: Susan Harkema, Ph.D., of the University of Louisville’s Department of Neurosurgery, Kentucky Spinal Cord Research Center and
Frazier Rehab Institute, a service of Jewish Hospital & St. Mary’s HealthCare in Louisville; and V. Reggie Edgerton, Ph.D., of the Division of Life Sciences and David Geffen School of Medicine at UCLA.
Joel W. Burdick, Ph.D., Professor of Mechanical Engineering and Bioengineering at Caltech, developed new electromechanical technologies and computer algorithms to aid in locomotion recovery in spinal cord injury patients.
The research was funded by the Christopher & Dana Reeve Foundation and the National Institutes of Health. Dr. Harkema is Director of the Reeve Foundation’s NeuroRecovery Network, which translates scientific advances into activity-based rehabilitation treatments. Dr. Edgerton is a member of the Reeve Foundation’s Science Advisory Council and its International Research Consortium on Spinal Cord Injury.
Drs. Harkema, Edgerton and their colleagues envision a day when at least some individuals with complete spinal cord injuries will be able to use a portable stimulation unit and, with the assistance of a walker, stand independently, maintain balance and execute some effective stepping.
Relief from secondary complications of complete spinal cord injury – including impairment or loss of bladder control, sphincter control and sexual response – could prove to be even more significant.
“The spinal cord is smart,” notes Dr. Edgerton, distinguished professor of integrative biology and physiology, and neurobiology at UCLA. “The neural networks in the lumbosacral spinal cord are capable of initiating full weight bearing and relatively coordinated stepping without any input from the brain. This is possible, in part, due to information that is sent back from the legs directly to the spinal cord.” This sensory feedback from the feet and legs to the spinal cord facilitates the individual’s potential to balance and step over a range of speeds, directions and level of weight bearing. The spinal cord can independently interpret these data and send movement instructions back to the legs – all without cortical involvement.
Dr. Harkema, Professor of Neurological Surgery at the University of Louisville, oversees the human research program there. She began her career as a postgraduate student in Dr. Edgerton’s UCLA laboratory, where he pioneered the field of locomotion with extensive animal studies. The two have been close collaborators ever since.
“This is a breakthrough. It opens up a huge opportunity to improve the daily functioning of these individuals,” concludes Dr. Harkema, lead author of today’s Lancet article. “But we have a long road ahead.”
“While these results are obviously encouraging,” concurs Dr. Edgerton, “we need to be cautious. There is much work to be done.”
To begin with, only one subject has been studied and he was an athlete in extraordinary physical condition before his injury. (Five human subjects have been authorized by the Food and Drug Administration to be enrolled in the study.)
Additionally, the first subject, while completely paralyzed below the chest (C7/T1 vertebra spinal section), was rated “B” on the American Spinal Injury Association’s classification system, since he did retain some feeling below the level of injury. It is not known how these interventions will work with “A”-level patients (no cognition of sensation below the injury). Yet another issue is the stimulation equipment itself. To date, researchers have only had access to standard off-the-shelf stimulation units designed for pain relief.
Finally, in earlier published animal studies, drug interventions further heightened the sensitivity and functioning of the spinal cord’s neural network. The compounds used in animals, however, are not approved for human use; it is likely that a large investment in further pharmacological research will be required to bring such compounds to market.
More than five million Americans live with some form of paralysis, defined as a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities. More than 1.275 million are spinal cord injured, and of those many are completely paralyzed in the lower extremities.
Epidural stimulation, in the context of paralysis of the lower extremities, is the application of continuous electrical current, at varying frequencies and intensities to specific locations on the lumbosacral spinal cord corresponding to the dense neural bundles that largely control movement of the hips, knees, ankles and toes. The electrodes required for this stimulation were implanted at University of Louisville Hospital by Dr. Jonathan Hodes, chairman of the Department of Neurosurgery at the University of Louisville.
“Today’s announcement clearly demonstrates proof of concept,” said Susan Howley, Executive Vice President for Research at the Christopher & Dana Reeve Foundation (which, in addition to supporting this particular work, has underwritten basic research in the field for more nearly three decades). “It’s an exciting development. Where it leads to from here is fundamentally a matter of time and money.”
Adds research volunteer Rob Summers, “This procedure has completely changed my life. For someone who for four years was unable to even move a toe, to have the freedom and ability to stand on my own is the most amazing feeling. To be able to pick up my foot and step down again was unbelievable, but beyond all of that my sense of well-being has changed. My physique and muscle tone have improved greatly, so much that most people don’t even believe I am paralyzed. I believe that epidural stimulation will get me out of this chair.”
# # #
Note to Editors:
Video of research subject available at https://louisville.edu/medschool/news-archive/0519-research
For research backgrounder, please visit www.ChristopherReeve.org/epipress.
An absolutely packed house came, saw and conquered the Christopher & Dana Reeve Foundation Roadshow!
Peter Wilderotter gave us background of the foundation. Bill Cawley took us through community quality of life program opportunities. And Susan Howley stunned us with her encyclopedic knowledge of the state of the art of medical research in the field of spinal cord injury.
To view the complete selection of photographs friend us ! We are the “Spinal Cord Injury Association of Washington” on Facebook.
Tomorrow is the Christopher & Dana Reeve Foundation Roadshow at the Renaissance Hotel in Seattle 6:30 to 8:30 pm!
SCIAW board members Katie Douglas, Tony Choppa and Karen Koehler will be attending. (Please come say hi).
Dr. Bombardier (SCIAW board member) has encouraged a number of doctors and therapists from UW Hospital to attend. And a number of those with SCI, their caregivers, providers and communityorganizations will be in attendance.
Here are some local blogs about the event:
If you haven’t registered: Link: http://www.christopherreeve.org/roadshow
SCIAW is thrilled that the Christopher & Dana Reeve Foundation will be hosting an evening with the paralysis community in Seattle. Pres./CEO Peter Wilderotter and Susan Howley, Executive V.P. of Research will speak. Ms. Howley is nationally recognized for her leadership in the field of spinal cord research.
This is an excellent opportunity to learn about:
The state of spinal cord and paralysis research; The Paralysis Resource Center; The Peer and Family Support Program, a national peer to peer support program; Team Reeve; The Reeve Foundation’s Advocacy platform and top 3 initiatives in 2011.
This is SCIAW’s first public outing. You will be able to meet and talk with others in the community living with paralysis and SCI, their families, therapists, doctors, leaders of local non-profits, people from local government offices and others as well as quality of life programs right in your own community.
The wine and cheese reception will be held:
Wednesday, April 13, 2011
6:30 to 8:30 p.m.
Renaissance Seattle Hotel
515 Madison Street
Seattle, WA 98104
Registration fee: $25.00. (SCIAW will pay the registration for those with SCI who sign up to become members (free) of SCIAW and wish to attend).
Space is limited. Register now at: Link: http://www.christopherreeve.org/roadshow
Save the date: Wednesday April 13, 2011.
We are excited to begin the inaugural year of SCIAW with a visit by the Christopher & Dana Reeve Foundation. The “Roadshows” started last year and have been making their way around the country. This will be a first time visit for Washington. Bill Cawley the Reeve Foundation Director of Community Programs Development, is locating a venue in Seattle for this get together.
The Roadshow will discuss the Foundation’s work in research, quality of life and advocacy followed by a social event. This will be the sixth state visited by the Roadshow. Everyone is invited to attend and admission will be free.
More details will follow. For background information on the Roadshows visit: