New in the PRC Library…

Knowing Jesse: A Mother’s Story of Grief, Grace, and Everyday Bliss by Marianne Leone. New York: Simon & Schuster, 2010.

Jesse Cooper had severe cerebral palsy and was a quadriplegic. He was unable to speak, suffered from seizures and died of them at age seventeen. He was an honors student who wrote poetry and windsurfed with his family. This heartfelt memoir from his mother chronicles his effect on his family as they learned to cherish his accomplishments. His father was actor Chris Cooper.

A copy of this book can be checked out from the Paralysis Resource Center’s library. Please see our online catalog and borrowing instructions.

Laura Hershey (1962-2010) died this past Friday. I had only recently swapped emails with her, as she became a member of our Blog Squad team. I know that she was born with a form of muscular dystrophy, used a power wheelchair and a ventilator, and that she was a well-respected writer and advocate.  

She wrote this for us when we asked her to describe herself:

I'm a writer and poet, also a consultant and trainer, specializing in disability rights, health policy, and community organizing. I'm an activist for social justice, particularly disability rights, and for economic justice, including the rights of home care workers and other people whose labor supports our independence.

Others have already started writing about her. This from Cory Silverberg at About.com:

One of the things I appreciated most about Laura's writing is her ability to write from a place of hope and pride, even when talking about the darkest parts of our human experience - suffering, isolation, shame, fear - without ever minimizing the pain or injustice. She was able to shine a light on things in such a way as to never wash them out, but simply allow them to be seen and understood more clearly, felt more acutely.

This from the Denver Post obituary:

Hershey was a prolific writer — in books of poems, magazines and online at a number of websites — and much of her work focuses on the struggle to maintain personal dignity in a world inclined to see the disabled as pitiable or useless. One of her most famous works is a poem titled "You Get Proud By Practicing."

"Remember, you weren't the one/who made you ashamed," the poems reads, "but you are the one/who can make you proud. Just practice,/practice until you get proud, and once you are proud,/keep practicing so you won't forget."

The Wednesday before she died, she posted a blog in our community she entitled, The Good and Bad of Gratitude. It starts like this:

During Thanksgiving season, it's time to talk about gratitude. This is a tricky subject for people with disabilities. It has its pros and cons. The positive is that there really is so much to be grateful about, and doing so helps us feel good and live well. The negative arises out of a whole history of exclusion and power imbalances. I'll start with the things that make me feel grateful.

While I barely knew her, Laura was one of those people in the world that I knew was picking up my slack. We all have to work a little bit harder now.

Rob

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A second US company, StemCells Inc., announced plans Novmeber 15th for a spinal cord injury clinical trial exploring the safety of human stem cells. These particular cells are purified human neural cells derived from fetal tissue and the StemCells Inc. Phase I will enroll patients who are between three and 12 months post-injury.

Dr. Aileen Anderson, a StemCells Inc. collaborator, first published the results of her spinal cord studies in PNAS in 2005 (Human neural stem cells differentiate and promote locomotor recovery in spinal cord-injured mice, Brian J. Cummings, Nobuko Uchida, Stanley J. Tamaki, Desiree L. Salazar, Mitra Hooshmand, Robert Summers, Fred H. Gage and Aileen J. Anderson). This was followed in 2010 by a Plos One publication in a model of early chronic injury, Human Neural Stem Cells Differentiate and Promote Locomotor Recovery in an Early Chronic Spinal coRd Injury NOD-scid Mouse Model (Desiree L. Salazar, Nobuko Uchida, Frank P.T. Hamers, Brian J. Cummings, Aileen J. Anderson).

Dr. Anderson, an Associate Professor in the Departments of Physical Medicine and Rehabilitation, and Anatomy and Neurobiology at the University of California, Irvine, is also Scientific Director of the Reeve Foundation's Injury Core Laboratory there.

Read more about it in the OC Register.

Stem Cells, Inc. press release.

Susan P. Howley
Executive Vice President, Research
Christopher and Dana Reeve Foundation

This year, the Reeve Foundation's 2010 Holiday Gift Guide for People Living with Paralysis is compiled of a bigger and better list of quality products at every price range. These are products that we found exciting, but we must say, we have not tested all of them.

We do believe that these products are easy to use and fun!

There are close to 70 ideas categorized as Wheelchair Extras, Odds & Ends, Splurge, Tools & Technology, Hobbies, Just Because, For Kids, and Fashion.

Wonderful items, including videos, from an Ergonomic Wheelchair Desks to Intela Voice Activated Light Switch to a Gro-eeze to help someone you know get back to gardening.

(Pictured is Great-Grips for making it easier to open door knobs.)

Shopping officially starts now! Dive into our gift guide and make the holidays a truly unforgettable time.

Be sure to share the gift guide with friends.

Rob

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The 2009 Reeve-Irvine Research Medal was awarded last week to Elzbieta Jankowska (pictured left), Professor emeritus at the Department of Neuroscience and Physiology, University of Goteborg, Goteborg Sweden and to Marion Murray (pictured right), Professor, Department of Neurobiology and Anatomy, Drexel University College of Medicine, Philadelphia, Pennsylvania. They were honored for their “pioneering studies on the structure, function and plasticity of spinal cord curcuits.”

The presentation was made at a symposium in Dana Point, CA sponsored by the Reeve-Irvine Research Center, with support from the Christopher & Dana Reeve Foundation. The symposium, Spinal interneuronal networks: development, organization, plasticity and targeting for rehabilitation of motor functions, was a Who’s Who of scientists in the field. In addition to the two medalists, presenters included Sten Grillner, Martyn Goulding, Serge Rossignol, Susan Harkema, James Fawcett and V. Reggie Edgerton.

The Reeve-Irvine Research Medal recognizes an individual, or individuals, who have made highly meritorious scientific contributions in the area of spinal cord repair, and whose research has stood the test of time and scrutiny. The medal includes a $50,000 cash award provided by Joan Irvine Smith and the Athalie R. Clarke Foundation. Between 1996 and 2007 seventeen exceptional researchers have received this prestigious award.

Past winners include several members of the Reeve Foundation Science Advisory Council or of the Foundation’s International Research Consortium for Spinal Cord Injury, including Martin Schwab,1996; Fred Gage, 1997; Reggie Edgerton, 1999; Albert Aguayo, 2000; Mary Bunge, 2001; James Fawcett and Jerry Silver, 2003; Carl Cotman, 2005.

The 2008 Reeve-Irvine Research Medal was awarded to Susan Harkema, principal investigator for the Reeve Foundation NeuroRecovery Network, and Hugues Barbeau for their accomplishments in the clinical translation of locomotor training using body-weight supported systems for individuals living with spinal cord injuries.

Joan Irvine Smith played a lead roll in the establishment of what is now the University of California at Irvine. Following Christopher Reeve’s injury, she worked with UC Irvine to establish a spinal cord injury research center in Christopher’s name, starting with her lead gift of one million dollars.

In 1996, the Reeve-Irvine Research Center and Joan Irvine Smith established an annual award for research in spinal cord injury. The award, originally called the “Christopher Reeve Research Medal”, with Christopher’s blessing became the “Reeve-Irvine Research Medal” in 2003.

Dr. Jankowska is an expert in spinal cord physiology, especially organization of interneuronal circuitry in the spinal cord. Her research has elucidated the role of interneurons in spinal reflex pathways and in integrating the commands from descending motor pathways including the corticospinal, rubrospinal and reticulospinal systems. Her studies have shed much light on how spinal circuitry actually works to control the coordinated activity of muscles.

Dr. Jankowska obtained her Ph.D. degree at Nencki Institute of Experimental Biology, Warsaw, Poland. She continued postgraduate studies at the Institut Marey in Paris, at Faculte de Medicine in Toulouse (France) and in the Dept. of Physiology University of Göteborg (Sweden).

Dr. Jankowska’s work has been supported by research grants from the Swedish Medical Research Council and the National Institutes of Health (NIH) of the United States, the latest of which is funded through 2013. Funding by the NIH is a high honor, because projects outside the United States are funded by the NIH only under exceptional circumstances. She has published 202 original research papers and review articles, and her work continues to be highly cited in the field.

The focus of Dr. Murray’s career has been on neuroplasticity and its relation to recovery of function after CNS injury. The goal is to identify translatable therapies that can improve the lives of individuals with spinal cord injury. She has used a variety of animal models, including goldfish, rodents, and cats, to study the role of axonal regeneration and sprouting, neuroprotection, and activity in restoration of function lost through injury. Anatomical studies have shown that collateral sprouting occurs spontaneously in response to injury and that both sprouting and regeneration can be elicited by therapeutic cellular transplants.

Dr. Murray did her postdoctoral work at McGill University in Anatomy and at the Rockefeller University in Neurobiology. She was appointed Assistant Professor in the Department of Anatomy at the University of Chicago and then moved to the Medical College of Pennsylvania (now the Drexel University College of Medicine). In Philadelphia, she and her colleague Michael Goldberger set out to forge an interactive group of colleagues and collaborators focused on mechanisms of recovery of function following spinal injury. This group has been funded continuously by an NIH Program Project Grant since 1988. Drexel University College of Medicine created a Spinal Cord Research Center in recognition of their success.

In 2005, Dr. Murray was appointed the Scientific Director of the Craig H. Neilsen Foundation. This Foundation provides funding for the search for treatments for spinal cord injury and recovery of function at the basic, preclinical and clinical levels. This significant resource provides both an opportunity and a challenge to bridge the gap between the laboratory and the clinic and to make a difference in the lives of individuals with spinal cord injury.

Sam Maddox
Knowledge Manager
Reeve Foundation

A recent NBC Nightly News, Making a Difference report was about canine companions. There are two wonderful pieces here. One is an overview and the other talks about the magic that happens when a dog picks a person. Be sure to watch both. The second one is even better.

We have a more in-depth article and videos that we produced about these service dogs (Janet Severt, founder of New Horizons Service Dogs (NHSD) in Florida and Cypress pictured). Janelle says it's one of her favorite stories she's ever written for us. Meet some of the people that love these dogs.

Rob

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Saralee usual writes essays for us about her relationships, adventures, and coping with life as someone who is living with paralysis. When we saw this turkey photo pop up on her Facebook page, we had to ask. Here's the story. Happy Thanksgiving everyone!

Fowl Play in our Backyard

By: Saralee Perel

When I think about ordering take-out food to be delivered to our home around Thanksgiving, a live turkey standing at our front door does not usually come to mind.

One morning I saw a gigantic wild turkey on our door step. I called out to Bob who was sleeping, “Bob? There’s a turkey at the door.”

When he came to see, there were 3 of them on the step. Upon hearing them pecking on the outside glass door, funnyman Bob said, “They’re knocking. Let them in.” Later I learned they were pecking because they saw their reflections and figured they had to get those “other” turkeys out of their territory. Since the team in the reflection wouldn’t leave, the real ones wouldn’t either.

I e-mailed a wildlife expert. He wrote back, “They attack dogs and cats and even people.” I am 5 feet tall. Turkeys can be 4 and a half feet tall. It is not pleasant looking eye to eye at a turkey. I told the wildlife guy that I was frightened for our dog, a border collie. He replied, “Don’t worry about the border collie. The turkeys should worry about that dog!”

This leads me to another ridiculous animal situation. Becky is the only stupid border collie in the universe. She’s terrified of the turkeys. When she sees them, she screams like a human. You couldn’t tell the difference between her scream and Janet Leigh’s in the shower scene from “Psycho.”

While Becky’s screaming, she runs, backwards, until she smashes into a tree. She doesn’t learn from this. She continues running backwards, keeping her eye on the turkeys until she slams into another tree. Meanwhile, the turkeys just stand there looking at her as if she’s the birdbrain.

By the time she crashes into enough trees so that she’s near the back door, she does a quick spin and makes a mad dash inside the house, where, still screaming, she scrambles to hide under Bob’s desk.

So now I’ve got this new phobia. When I leave the house, I race to our truck, constantly scanning the yard for lurking turkeys. They roost 20 to 40 feet up in the trees. Not only am I scared to death of them chasing me; I’m expecting a turkey to drop on my head. I can imagine calling Bob at work from my cell phone. “Bob? There’s a turkey on my head.”

I researched how to humanely get them the heck away from here. On the National Wildlife Federation web site, suggestions (I am serious) include: “Whitewash all buildings so they don’t roost,” as well as setting off “propane cannons.”

One other wildlife expert gave me this ever-so-practical idea, “There are machines that make gunshot sounds every once in a while. But when they realize nothing is really there shooting at them, they’ll probably just go sit on the machine.”

Great. I’m surprised someone hasn’t suggested I get the Stealth Bomber to roar around our backyard in circles, dropping dynamite at 10 minute intervals. Now I know why Bush didn’t find any weapons of mass destruction. Everybody in the “Turkeys are Fair Game” club is hoarding them.

When I googled “Wild turkeys,” I found a local association’s newsletter. YAY! Finally, I’d read about how to get them out of here. What did I see instead? Stories and pictures of wild turkeys looking at their reflections in the glass on the front doors of people living within a mile from us.

The association’s suggestion? Enjoy the turkeys. I may take them up on that advice, but not in the spirit of how it was meant.

Award-winning columnist/novelist, Saralee Perel, welcomes e-mails at sperel@saraleeperel.com or via her website: www.saraleeperel.com.

Last night, the Reeve Foundation hosted their annual A Magical Evening gala. With it being the 20th anniversary of the event, it was nothing short of magical at all.

This being my second year attending the event, I was even more excited than last. From stuffing hundreds of gift bags yesterday morning to the last person shaking it on the dance floor last night, months of hard work and planning fell perfectly into place. Each and every detail make up the tightly wrapped package full of magic during A Magical Evening.

The awards alone were enough to feel inspired. Alexandra Reeve Givens presented IBM with the Visionary Leadership Award for its work in making technology accessible. Will Reeve presented Marsha Garces Williams with the Dana Reeve Hope Award for her humbling work and dedication to the Reeve family. And Matthew Reeve presented the Gonzalaz-Bunster family (pictured above) with the Christopher Reeve Spirit of Courage Award for founding The Walkabout Foundation.

Maybe it is just because I'm still enwrapped in the amazing feat of our Team Reeve athletes at the New York City Marathon, but I was overjoyed to see some of those Team Reeve-ers in attendance last night. No longer bearing their Team Reeve shirts, these athletes deserved all the praise they get. For me at least, they are magic.

And speaking of Team Reeve, Jesse Ruben came out on stage and shared his reasons for why he ran the marathon. To top it off, he performed "Song for Zack" and introduced his friend and Reeve Foundation Ambassador Zack Weinstein (pictured).

I can't forget to tell you about board member Alan T. Brown (pictured).

Alan addressed exactly what the Reeve Foundation is all about -- Today's Care. Tomorrow's Cure. As he sat on stage in his wheelchair, he was a reminder to all in attendance simply that life is meant to be lived.

Even now with the event done, the magic has not worn off. I can only hope that the magic of last night doesn't end there. I hope that it continues onward and that each and every individual will stand up for those who can't.

View more photos!

Janelle

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I simply can not get enough of these stories that ask able-bodied individuals to spend a day in a wheelchair. New Jersey's Caldwell College took on this challenge. Students and faculty spent a day on wheels. Here's some of the reactions at day's end:

"I hope what our campus community takes away from this Disability Awareness Day is that every day we need to be aware, alert, conscious of disabilities; those that are obvious and those that are hidden. It is not about sympathy or pity. It is about awareness, empathy and kindness," Benowitz said.

Dr. Blattner said it was very important for the lessons learned to go "beyond today," and that everyone learn to be sensitive to the needs of students who have disabilities. She said that as a person who likes to help other people, it was difficult for her to ask and receive help from others when she needed it while using the wheelchair.

Read it all here.

Janelle

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This story comes to us from ABC News. One month shy of one of the happiest moments of her life, bride-to-be Rachelle Friedman was paralyzed after a not so fun joke went wrong at her bachelorette party.

"It all happened very quickly," Friedman, 25, told ABCNews.com. Friedman had been out celebrating her pending nuptials with her bridesmaids when they decided to go for a swim at the end of the night.

"We got home, ran upstairs and changed into our bathing suits," said Friedman. "My best friend -- and she still is my best friend -- she playfully pushed me in like we've done a million times."

"It was playful, but it went wrong," she said. "It was a freak accident." She hit her head on the bottom of the pool.

"I instantly went stiff and couldn't move," said Friedman. "I weirdly did not panic, I kind of knew exactly what happened and I floated up to the surface and said, 'Help!' and then my friends called 9-1-1."

"I remember when they were pulling me out of the water I could see my legs below me but I couldn't feel the water on them," she said.

Read all of Rachelle's story and see the video.

Rachelle has an incredible outlook on her future despite the dramatic change of events. We here at the Foundation hear all too often about accidents that change people's lives in an instant. Next time you go swimming, please remember some simple safety that can never be taken too carefully.

Janelle

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Ever since I wrote a piece on winter sports for people living with paralysis, I've had a new appreciation for adaptive sports athletes, like Andy Campbell. Andy wrote in to Gizmodo about why he should win the "Ultimate Mountain Gig." Here's a bit of what he wrote:

I'm a disabled iraq veteran who loves Giz and skiing. I ski sitting down in a "sitski" and have competed in the Winter X-Games and been featured in last year's Warren Miller film.

A ski resort in Utah is running a competition for "The Ultimate Mountain Gig" with the winner living at the mountain and skiing all season in return for blogging and stuff.

I'll come to Snowmodo and dazzle you with my sweet jumps and mad skills ;) I ski, paraglide, mountain-bike, kayak and even rock-climb despite not being able to use my legs at all, maybe some of the different equipment I use to do it all is Giz worthy?

Read the rest.

Watch Andy's video and be sure to vote for Andy to win the "Ultimate Mountain Gig!"

Janelle

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You would think by now that with marathon season all wrapped up, we might be tired just thinking about all those miles our Team Reeve participants conquered. But that is definitly not the case. To talk to marathoners after they've accomplished all that they have is just as exciting as talking to them before the big marathon day.

Here's two recent news pieces about some of our awesome (to say the least) Team Reeve-ers!

Ryon Lane, (pictured) who broke his neck in September 2008 just ran the New York City Marathon... in under three hours! What!? He was recently featured in a Runner's World online blog and on Garmin's website.

We love hearing from fitness customers who are able to accomplish their goals with the help of Forerunner to mind their miles, pace and more. But the email we got from Ryon Lane on Monday, after running a sub-3 hour marathon at the New York City Marathon, had quite an impact, as well as an unbelievable back story.

Read what Ryon wrote.

And then there are friends Michael Pucci (pictured) and Freddy Ketchum. Having been friends with Christopher and Dana's son, Will, these two boys decided to take on the 26.2 miles of the New York City Marathon together.

"We both figured we were pretty good athletes, pretty good runners," said Ketchum, a sophomore at Yale University.

The two began training in July, with a 20-mile run in New York's Central Park a few weeks before the big event. They finished together in 4 hours and 32 minutes.

Still, even with training, the last 6 miles were tough.

"You have nothing left in the tank," Pucci said.

Written on the back of their shirts was a quote from Christopher Reeve, who died in 2004: "For everyone who thought I couldn't do it. For everyone who thought I shouldn't do it. For everyone who said, `It's impossible.' See you at the finish line!"

Read the rest about Michael and Freddy.

As always... GO TEAM REEVE!

Janelle

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This past weekend, Alexandra Reeve Givens appeared on PIX11 to talk about some of the latest progress in research for those living with spinal cord injuries and the ongoing efforts of the Reeve Foundation.

Have a look at the video here. It's very insightful.

Here are statistics on paralysis and spinal cord injuries from a 2009 prevalence study conducted by the Reeve Foundation.

Janelle

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In this study, published online November 14, 2010 in Nature Neuroscience, the investigators explore what underlies the sponteneous recovery seen after partial injury in a non-human primate. Among the authors, Jacqueline Bresnahan is chair of the Foundation's Science Advisory Council (SAC), V. Reggie Edgerton is a SAC member and a Principal Investigator in the Reeve International Consortium on Spinal Cord Research and Gregoire Courtine is a former Edgerton postdoctoral fellow and Consortium Associate.

The study shows unexpected and extensive natural recovery after spinal cord injury in primates. The findings, to be published Nov. 14 in the advance online edition of Nature Neuroscience, may one day lead to the development of new treatments for patients with spinal cord injuries.

While regeneration after severe brain and spinal cord injury is limited, milder injuries are often followed by good functional recovery. To investigate how this occurs, UC San Diego and VA Medical Center San Diego researchers studied adult rhesus monkeys. The team was surprised to see that connections between circuits in the spinal cord re-grew spontaneously and extensively, restoring fully 60% of the connections 24 weeks after a mild spinal cord injury.

Read the rest.

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During the NYC Marathon we had the chance to meet with our friends from New Zealand at the CatWalk Trust -- "dedicated to raising funds to support the body of scientific opinion which says a cure for spinal cord injury will be found."

This year their founder, Catriona Williams, who was spinal cord injured eight years ago, participated in the marathon. Before hand they wrote this to us:

Catriona continues to treasure a letter Christopher sent her at the time of her accident. In it, he told her she would always be the same person, no matter what. She has kept that letter, framed, in her gym room for eight years. I am sure he would be proud of how far she has come.

Her team of 25 all finished the race, raising over $285,000.

We just heard form them again this week. They had a wonderful idea, a national campaign they call Get Black on Your Feet. It involves selling branded black socks through New Zealand’s largest supermarket chain. It's a joint venture between The CatWalk Trust, The New Zealand Spinal Trust and The New Zealand Rugby Foundation.

Awareness and fundraising. Brilliant!

Thanks for sharing guys!

Rob

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