This is where the staff of the Reeve Foundation is sharing up-to-the-minute information and putting some context around the news affecting the spinal cord injury and paralysis community. Not to mention insight into what's going on here at the Foundation.
Feel free to comment and offer suggestions. We'll respond.
New in the PRC Library…
The Boy Who Came Back From Heaven: A Remarkable Account of Miracles, Angels, and Life Beyond This World. By Kevin Malarkey. Carol Stream, Ill.: Tyndale House Publishers, 2010.
Kevin and his six year old son Alex were in a car accident that left Alex a quadriplegic. Interspersed with Kevin’s account of the accident and rehab are chapters written by Alex. Alex was in a coma for two months after the injury. When he recovered well enough to talk, he told his parents that angels and Jesus had taken care of him during that time. He recalls specific sights and conversations from his time in Heaven. Years after his injury, Alex became the first child to have the “Christopher Reeve surgery”—that is a phrenic nerve pacer implant. The implant is to wean people off ventilators or lengthen the amount of time that they can be off a vent. An interesting account from a child and family whose faith is very important to them.
A copy of this book can be checked out from the Paralysis Resource Center’s library.
Please see the online catalog and borrowing instructions.
Posted by
GerthroFriday, July 30, 2010
The entries are starting to pour in for Reeve Foundation's 2010 Best Dad on Wheels. I thought I would share a bit of one of the entries from Ronnie McDaniel's son (Ronnie is pictured here with his grandson):
My dad may be in a wheelchair, but don't call him handicapped. He has never allowed his physical limits to hinder him from living life. He does the yard work, house work, and everything in between ... He is always there for us with words of wisdom and a helping hand. I have never met anyone like him.
So does your dad, or another dad you know, who is living with paralysis, demonstrate dedication, love, encouragement, and goodwill on a regular basis? If so, he could be the 2010 Best Dad on Wheels! In 200 words or less, tell us why you feel the father you are nominating should be the 2010 Best Dad on Wheels.
Find out more.
Rob
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Posted by
GerthroFriday, July 30, 2010
From The New York Times today:
The world’s first authorized test in people of a treatment derived from human embryonic stem cells has been cleared to begin by the Food and Drug Administration. The trial will test cells developed by Geron Corporation and the University of California, Irvine in patients with new spinal cord injuries.
Read the rest.
Read more about stem cells.
Rob
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Posted by
JLoFriday, July 30, 2010
I am currently conducting a spinal cord injury research study on which I am the Principle Investigator. I was fortunate to be awarded a Quality of Life Grant from the Christopher and Dana Reeve Foundation, and we developed a research study that followed individuals with spinal cord injury over a 12-week period doing weekly Tai Chi Chih sessions. They also did the exercises at home with guidance from an instructional DVD that we produced.
Our objective for the initial study was fairly basic. We wanted to see if the stress reduction and improvements in quality of life and other benefits of conventional standing Tai Chi Chih could be transferred to the seated version. The short answer is a definite yes. The initial objective of the now ongoing study was to look at things like reduced pain and an increase in overall well-being and that’s what the individuals taking part in Tai Chi Chih reported. (Image from UnitedSpinal.org)
Learn more about Tai Chi Chih.
Take a look at our Paralysis Resource Center’s Lending Library. It has tons of great materials, including books and video instructions, on exercise and fitness. Simply search words like ‘exercise,’ ‘Tai Chi,’ or ‘aerobics.’
Don’t even think of it as working out. Just have fun!
Janelle
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Posted by
JLoFriday, July 30, 2010
Team Reeve participant John Carson (pictured) is being considered an Ironman.
Maybe that's because he just completed the Ironman Lake Placid.
Or maybe it's because he did it after being hit by an SUV in July 2009 sustaining a C5/C6 spinal cord injury.
In late May we talked to John Carson about his wild and determined journey to recovery after a terrible accident with an SUV. He then revealed his plan to race Ford Ironman Lake Placid and a couple days ago he did exactly achieve that. After 14 hours 56 minutes and 53 seconds he got to hear "John Carson, you are an Ironman."
Slowtwitch: John, you set out to compete at Ironman Lake Placid against some stunning odds and you did it indeed. Congratulations.
John: Thank You! I know my journey to the start line was not conventional, but it made my day that much more amazing. Everyone was quick to remind me before the race that no matter what happened that day I had already won the race of my life. In one year and 9 days time I went from being paralyzed after being struck and suffering a spinal cord injury, to lining up with all the able bodies at Ironman Lake Placid. All that was great but I knew I needed this race to be whole again and I would not stop until I crossed that line in 17 hours or less.
Read more about "the race of my life" here.
Want to read more about John? Click here!
Congrats on being an Ironman, John!
Janelle
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Posted by
GerthroThursday, July 29, 2010
For the third year running, the Keep On Rollin' Charity Car and Bike Show to benefit the Christopher and Dana Reeve Foundation rolled up big participation from car owners and spectators.
The show, held July 17th at Brighton Ski and Snowboard Resort, is the brainchild and passion of Ryan Stevenson, 30, of Salt Lake City, Utah. Ryan sustained a spinal cord injury five years ago while snowboarding at Brighton. The annual event is supported by the Utah Chapter of the Christopher and Dana Reeve Foundation, of which Ryan is a founding member.
About his injury Ryan said, "It was like somebody threw a hand grenade into my life, things just went all over the place." He cites his family and the Reeve Foundation for helping him recover and get back to life. He explained, "They lifted me up and said we're here for you, and whatever you need, you have it."
A '65 Chevy Impala helped Ryan steer his life in a positive direction again. In a way, it was part of his therapy. "I've always wanted an old school Impala that I could make into a cool hot rod," he said. Ryan and his dad restored the car and came up with a plan. Ryan wanted to do what he could to help find a cure for paralysis and help others with similar injuries. Keep On Rollin’ was the result. “It’s a win-win for everybody” he said.
The truth in that statement was evident as 250 cars and bikes were on display for the hundreds of spectators who enjoyed perfect summer weather, great music and food. Cars and bikes included everything from classic and custom Mustang’s and Corvettes to chopped Hot Rods, Ferrari’s, Porches and custom motorcycles. Key sponsors included Willy's garage, Kindig Design, R & M Engineering Carl’s Jr., Firehouse Carwash, and JC Hackett.
The 2010 show took in nearly $15,000 which will go to support the research and quality of life programs of the Christopher and Dana Reeve Foundation.
To see photos of the event, click here. To see the KSL-TV article, click here. For a review of the Deseret News article, click here. For more information visit the Keep On Rollin’ website and Facebook page, or the Reeve Foundation Utah Chapter Facebook Page.
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In rodent models, the distance from a cervical spinal injury to the brain cortex is about 3 cm; in the rhesus monkey that distance is 10 cm and in humans it's 25 cm. Any treatment that is effective in a rodent model of spinal cord injury will need to travel longer distances in primates or humans to be effective.
In this study, Tuszynski and colleagues explored whether an effective rodent treatment (neurotrophic factors administered to the injury site to limit damage to the nerve cells and promote axon regeneration) would also work in primates - that is, would the regenerating axons traverse the longer distance.
Their findings show that the neurotrophic factors (also called growth factors) were effective in the primate, helping to reduce injury-related cellular degeneration and support regenerating axons.
Get more information about SCI research.
Douglas S. Landsman, Ph.D.
Director, Individual Research Grants Program
Christopher & Dana Reeve Foundation
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Posted by
JLoThursday, July 29, 2010
Living with paralysis, Mark Matheson (pictured) recently crossed the Molokai Channel in Hawaii.
A paraplegic … Fifteen years ago, Mark Matheson's life was changed forever. As he notes on the Easter Seals Hawaii website, "I remember laying flat on my back, in excruciating pain, unable to move and from the look on the faces of my friends and the firemen who came to my aid, I knew I was in big trouble." He had fallen four stories, from the balcony of a hotel in Kauai. The fall crushed his back and left him paralyzed from the chest down.
Read the rest of Mark's story here.
And speaking of water sports, don't forget to check out Life Rolls On, a subsidiary of the Reeve Foundation. They have events all over the U.S. that get people living with a spinal cord injury back into the water!
Janelle
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Posted by
JLoWednesday, July 28, 2010
The Reeve Foundation hit the road last week on the way to the greater Boston area for our Road Show series and the 2nd Annual Links to a Cure Golf Tournament. We wanted to document our trip to give you the inside scoop on our New England adventures.
Our first stop was a visit to our friends at Journey Forward, a nonprofit with intense exercise programs aimed at improving the overall health of those with spinal cord injuries. The inside of the building instantly warmed us with the bright colored walls, shiny wood floors, and wide open space perfect for getting physical and interacting with others. There greeting us and providing the tour were three gentlemen: Dan Cummings, Founder; John Walters, Program Director; and Brett Fechter, VP of Operations. They gave us a thorough and detailed description of their activities, and we even got to catch some of the action by observing one of their 30-40 clients partake in his exercise regimen. (Journey Foward client, Kevin, and trainer, pictured)
Our next stop was the Boston Marriott Long Wharf hotel where our Road Show was being held. After a quick Starbucks run, we headed over to set up and meet our guests including local community members, medical staff, and other surrounding nonprofit organizations. We were privileged to engage in conversations with individuals ranging from personal injury stories to discussions of research and its advancements following the presentations of our keynote speakers such as our Executive VP of Research, Susan Howley. One guest reflected on the evening by saying, “The night was incredible and it was a great experience. I had the opportunity to meet a lot of other people in the SCI community, both working in the field and also living with SCI. I found the new research exciting and the entire night absolutely worthwhile.”
Our final destination was Olde Scotland Links Golf Course in Bridgewater, MA for our 2010 Links to a Cure Golf Tournament which netted over $10,000. The initiator behind the event is Richard Maloney (pictured with members of the golf committee), a former client of the NeuroRecovery Network at Boston Medical Center which is sponsored by the Reeve Foundation and also focuses on intense exercise-based training to improve the physical state of a person living with spinal cord injury. Rich wanted to “pay it forward” to our program because of the significant difference it made to his injury in areas of quality of life, mobility, and independence. Early in the morning, approximately 90 golfers showed off their swing on the greens and shortly after the crew joined Barrett’s Alehouse where our catered lunch was being served along with a raffle and auction to enjoy. Some people got lucky taking home prizes like autographed sports memorabilia, tickets, restaurant certificates, and a weekend vacation amongst others. But in my opinion, the combination of great friends and a great cause means we all come out winners!
Nicole
Development Assistant
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Posted by
JLoWednesday, July 28, 2010
Our first cycle of Quality of Life grants for 2010 was a success. 89 grants were awarded to non-profit organizations across the U.S. There was a lot of focus on obesity and natural disaster relief.
41 of the 89 grants were given to organizations that were focusing on physical fitness initiatives for people living with paralysis.
Portlight Strategies (pictured) received a grant to help with relief in Haiti.
Read all about the grantees here!
The second cycle of 2010 grants is now open. Learn all about the Quality of Life program, the three categories (Actively Achieving, Bridging Barriers, and Caring and Coping), helpful hints, and more.
Janelle
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Posted by
JLoWednesday, July 28, 2010
A device that detects the subtle movements needed to sniff air through the nose or mouth can steer a wheelchair or allow completely paralyzed people to type messages, Israeli researchers reported Monday.
One patient wrote letters to her family for the first time since she had a stroke, while others used the device to surf the Internet or steer a wheelchair.
While no replacement for a true brain implant that would allow users to control devices with thoughts alone, the "sniff controller" works better for many patients than eyeblinks or other methods of communicating, the researchers reported in the Proceedings of the National Academy of Sciences.
"Indeed, sniffing allowed completely paralyzed locked-in participants to write text and quadriplegic participants to write text and drive an electric wheelchair," they wrote.
Read the rest.
A more in-depth explanation here.
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Posted by
JLoWednesday, July 28, 2010
With the 20th anniversary of the Americans with Disabilities Act having just passed on July 26, Detroit, Michigan is making their city more accessible.
Detroit has yet to comply with a federal law requiring curb ramps at thousands of intersections throughout the city.
A federal judge five years ago ordered Detroit to comply with the Americans with Disabilities Act by installing access ramps that enable physically disabled or impaired people to cross city streets.
Read about Detroit's plan for the rest of 2010.
Speaking of accessible cities, did you city make the Top 20 Most Livable U.S. CIties for Wheelchair Users?
Janelle
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Posted by
GerthroTuesday, July 27, 2010
This from Oreganlive.com:
Portland-based cartoonist and musician John Callahan died Saturday morning at the Good Samaritan Hospital from complications related to his quadriplegia, according to brother Tom Callahan. He was 59.
Callahan, a quadriplegic since a traffic accident at age 21, is best known for his cartoons that consistently stepped beyond the boundaries of political correctness. His work appeared in more than 200 newspapers and magazines.
Read the rest.
Watch a video interview he did with the Reeve Foundation.
Join in on the discussion in our forum about John.
Rob
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Posted by
MaggieMonday, July 26, 2010
What an incredible day for the paralysis community! It was such an achievement to gather so many members of our community together to commemorate the historic 20th anniversary of the Americans with Disabilities Act. (ADA photo by Gil Garcetti.)
On behalf of the Reeve Foundation, we want to thank everyone who joined us yesterday. It was a VERY early morning for most of the attendees and we appreciate your efforts to help us break the Guinness world record. Special thanks to our friends in the Los Angeles disability community who helped recruit their members and constituents and kudos to our ambassadors who turned out en masse to participate.
The day began bright and early in the Dodger Stadium parking lot, with the iconic stadium sign right behind us. After a few welcomes and introductions, Reeve Foundation ambassador Ali Stroker (pictured) began the program belting out the National Anthem like only Ali could. Gary Karp, whose list of distinctions is too long to list, served as emcee and demonstrated his impressive juggling skills. We were also joined by Josh Rawitch, VP of Communications for the LA Dodgers, Mark Ridley Thomas, LA County Supervisor, Mayra Fornos, founder of Ralph’s Riders and David Geffen, ADA lawyer.
The entertainment highlight of the program was Auti Angel and her Chairlie’s Angels, who performed a moving, get the crowd going dance routine. Our own Angela Rockwood Nguyen was part of the dance troupe!
But that was just the start! After the crowd of 194 people formed the letters ADA, they quickly assembled into a moving line when we officially broke the Guinness World Record.
While many of the attendees hailed from the greater Los Angeles area, we had friends from San Diego and Orange County as well. But I was most moved by a family who drove 800 miles from northern Mexico to join the festivities. Martin Gonzalez was spinal cord injured four years ago in a car accident at the C5 level. Martin received no therapy and his chair was not even fitted with a proper seat cushion. However, even after the 800 miles drive, Martin and his parents were all smiles to be a part of the day’s festivities and anxious to get involved.
Thanks again to everyone who helped spread the word and took time out of their weekends to help make history.
See some of the photos. Here is some video. More to come.
Maggie Goldberg
Senior Vice President, Marketing and Communications
Christopher & Dana Reeve Foundation
Posted by
GerthroMonday, July 26, 2010
The Foundation's President and CEO, Peter Wilderotter (pictured), wrote a piece about the ADA that is appearing on the Huffington Post today:
Christopher Reeve said it best:
"Our nation cannot tolerate discrimination of any kind. That's why the Americans with Disabilities Act must be honored everywhere."
President George H.W. Bush put it this way: "Let the shameful wall of exclusion finally come tumbling down." He said these words exactly twenty years ago, on July 26, 1990, at the White House ceremony where he signed the ADA into law.
This week's 20th anniversary of the Americans With Disabilities Act is a legitimate cause for celebration. A large chunk of that shameful wall has indeed come tumbling down. And the ADA's vision is widely honored.
Yet considerable demolition work still remains to be done.
See what Peter cites as examples of the work that still needs to be done.
Rob
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