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  • Two Friends. Two Injuries. One Mission.

    Having been classmates and friends since the 1980s, Danny Heumann and Alan T. Brown share a unique story that has now brought them together again as members of the Christopher & Dana Reeve Foundation Board of Directors.

    Danny was paralyzed at 18-years-old in August 1985 in a car accident. In January 1988, Alan became paralyzed, at the age of 20, as a result of a swimming accident.

    The photo of the two of them is from their high school yearbook.

    Read the rest of their unique journey.


    Rob

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  • Remembering Dana Reeve on her birthday

    Dana Reeve would have been 49 today (March 17th). There are a lot of folks still here at the Foundation that worked with her, and I mean worked. She envisioned and implemented what is our Quality of Life program, born out of her first hand knowledge of how tough it is to care for a loved one living with paralysis.

    "Sweet Dana, was such a caring, beautiful, funny, smart, and passionate woman," says Donna Valente, who runs our Quality of Life program and worked closely with Dana. "We used to spend hours upon hours in a small room with no windows going over boxes of grant applications.  She was the epitome of class with a wicked sense of humor, and she dedicated so much of her life to making life better for other people. Chris and Dana were very kind, enormously talented and special people and will always be my heroes."

    Dana once said, "Anybody who has experienced any kind of profound loss or tragedy knows that is changes you. It’s a relief to find out you can actually redefine what’s normal."

    (Dana is pictured above with long-time friend Robin Williams.)

    It's a beautiful day to go out and redefine normal for yourself.

    Rob

    Links about Dana:
    Her last public appearance was singing at a Rangers game. The Rangers are good  friends of the Foundation.

    Long-time friend, Cristina Carlino, founder of philosophy, has a tribute to Christopher and Dana's love story on her company's site.

    There is a biography on our site and Professir X, a musician who is part of the paralysis community, posted a wonderful video tribute to Dana and Christopher.

    There are many links across the web about Dana, but My Hero Project is one of my favorite. It includes links to two NPR interviews about Dana.

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  • Dancer back on her feet

    We wrote a story awhile back about a young lady, Nicole Marquez (pictured), who was in New York City following her dream of becoming a professional dancer, when she was paralyzed from a fall. Read that story, You Can't Stop This Dancer, here.

    We see now that Nicole is choreographing and will perform in her hometown of Madison, Mississippi.

    One segment features the views of both a military wife and her husband about their hope as he served in the Mideast. Another focuses on a woman whose husband was diagnosed with cancer but has been in remission for a year. Another deals with a family who was told that a Down's syndrome daughter wouldn't live past age 18 but now celebrates her age beyond that. Advertisement In the dance portions, senior Mimi Beise represents "this figure of me and the average Joe, everybody whose gone through problems. She's everybody and she's me," Marquez said.

    Read the rest.

    Good luck, Nicole!

    Rob

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  • Dr. Dan is in the community today

    Dr. Dan Gottlieb is in our community every Tuesday offering his advice as a family psychologist and answering questions. He also has a new book coming out: The Wisdom of Sam: Observations on Life from an Uncommon Child. I was lucky enough to get an advance copy. I can't tell you how inspirational and motivational this book is. It is a collection of observations and life lessons that I just could not put down. I would finish a chapter and think, Oh just one more. And stayed up half the night reading!

    Dan's posted a video with him and Sam in it. You have to see it.

    Here's just part of a recent post by Dr. Dan:

    I just did a radio show on neuroplasticity, how the brain, with practice, can actually heal significant deficits that we used to think were incurable. The mantra of the fees nor a plastic experts is: "neurons that fire together wire together". So that when we do something enough it becomes habit -- no matter what we do.

    We know how that works with dozens of our little quirks. But it works exactly the same way with our worldview. The more we express it, the more we believe it, the more it becomes our truth. "I am a quadriplegic and I will never experience joy again." That's what I felt for the first few years. Fortunately that belief system was not locked in so that when I did experience joy, I slowly changed my worldview.


    Read more.

    Rob

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  • Don't miss the Paralympics

    It's still early, but in sledge hockey at the Vancouver Paralympics, it is looking like a USA - Canada final. That would be fun. Canada and the USA are also on top of the wheelchair curling standings. Our new friend and only woman on the US curling team, Jacqui Kapinowski, sent us this photo yesterday. See more like this here.

    Keep up with everything paralympic here including video and live feeds of the events.

    Find out how to get into winter sports including skiing here (which there is also video of).

    Rob

    PS: And just for fun, you should watch this. One family has its own bobsledding competition going.

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  • Embryonic stem cell research stalled

    This from Monday's Washington Post:

    One year after President Obama announced he was lifting his predecessor's controversial restrictions on federal funding for human embryonic stem cell research, some scientists are complaining that so far the new policy is -- ironically -- more of a burden than a boon to their work.


    Read the rest.

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  • We are hitting the road!

    Thursday, March 18th, the Foundation is hosting an evening with our President and CEO Peter Wilderotter and Executive Vice President of Research, Susan Howley. Ms. Howley is nationally recognized for her leadership in the field of spinal cord research for the last 25 years.

    We will be sharing information about the foundation's programs, including updates on recent progress in spinal cord research, news about the Reeve Foundation's plans in Florida, and the activities of the Brooks Adaptive Sports Program. We will also be taking your questions.

    We are holding these "road shows" across the country. There will be excellent opportunities to learn about the state of spinal cord injury research. 

    Sign up for Jacksonville and see where the other road shows are being held.

    See you there.

    Bill Cawley
    Director of Chapter Development



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  • News on the underlying mechanisms of spasticity

    A recent paper in the journal Nature Medicine sheds some important new light on the underlying mechanisms of spasticity that often develops after a spinal cord injury. Involuntary contractions of muscles, or spasticity, can have potentially serious consequences, and although medications are available that reduce spasticity, they can also interfere with positive motor functions or rehabilitation.

    Although spasticity represents an involuntary movement of muscle, the muscular activity originates with excited neurons telling the muscles to constantly move and contract (hyperexcitability). Previous dogma held this hyperexcitability to be related to uncontrolled intracellular levels of sodium and calcium in the nerve cells.

    This new paper identifies changes in intracellular chloride levels as a potentially important regulator of spasticity. The authors, Boulenguez et al, also identify possible "upstream" mechanisms, including decreases in the neurotransmitter BDNF, as responsible for controlling the chloride levels, thus hinting at new targets available for therapeutic intervention.

    An accompanying editorial by Drs. V. Reggie Edgerton (pictured) and Roland Roy states that, "Further study of these adaptive events is likely to lead to a better understanding of the phenomena that underlie spasticity and ultimately provide ways to alleviate its symptoms in a safe and effective way. Dr. Edgerton is a member of the Reeve Foundation's International Consortium on Spinal Cord Injury and its science advisory council. 

    The research was partially supported by a grant from the Reeve Foundation to the lead author Laurent Vinay, as is ongoing follow-up work on this project.

    Douglas S. Landsman, Ph.D.
    Director, Individual Research Grants Program
    Reeve Foundation

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  • King Cannon is the painter of the month

    With a name like King Cannon (pictured), this guy is going to be a star! He participates in the Artistic Realization Technologies program in Jacksonville, FL. A.R.T. is based in New Jersey, but will travel. They give people with disabilities the opportunity to be artists, with resounding results.

    ARC Jacksonville has had numerous high-profile exhibitions, including a stellar show at JAMOMA Jacksonville Museum of Modern Art. There have been amazing numbers of sales of paintings; paintings hang in the headquarters of major corporations and in the homes of nationally known collectors such as Preston Haskell.

    Say hello to King:

    QUESTION: King, anything you want to tell about yourself to all those around the world who read Painter of the Month?

    KING: Yes, I like to do it. Because there is a lot of money in it.


    Now you have to read more.

    Rob

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  • Hollywood casting call: 11-year-old in a chair

    This is for a pilot with Paul Reiser. It's very cool because you can do it all online. You make a demo tape and upload it to their site.

    They are looking for ZEKE : MALE. 11 years old. Please submit ages 10–13. The kid is sweet, funny, really smart and upbeat. He loves sports, music, and everyone he meets – especially adults. Inquisitive and with a mind like a steel trap, he remembers everything – which can be good or bad! He can easily get anxious and sometimes gets a bit obsessively focused on things.
    And oh, he has used a wheelchair since birth.

    Find out more here.

    Good luck and please remember us when you hit the big time, kid!

    Rob

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  • What are the top 10 things that annoy people in wheelchairs?

    We are trying to put together a list of the top 10 things that annoy people in wheelchairs. We may even have a vote. The purpose is to make people more aware.

    Go here. Leave your list. See what others wrote. Don't feel like you have to contribute 10.

    Thanks,

    Rob



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  • It's track season for one young girl

    I've have written about Elle here a lot. (I looked it up, nine entries since October 2009.) She is now a high school sophomore and is back out on the track, racing in her wheelchair.

    Last year, some of the schools in her league did not want to recognize her as a team member. Work was done, meetings were held, and this year she (and any other high school wheelchair athlete in the state of Florida) is allowed to compete.

    The local TV news just did a nice piece on her where you'll find out why she has the nickname: "beast mode."  Watch the video.

    Read the story Elle's mom wrote about her.

    Rob

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  • Calling all filmmakers with disabilities

    Sorry for the late notice on this. The deadline is this Friday, March 12th.

    VSA is an international nonprofit organization founded 35 years ago by Ambassador Jean Kennedy Smith to create a society where people with disabilities learn through, participate in, and enjoy the arts.

    They are inviting emerging filmmakers with disabilities, ages 18 to 30, from around the world who are interested in expanding their education and knowledge of documentary filmmaking to apply to be an apprentice at the renowned AFI-Discovery Channel SILVERDOCS Documentary Film Festival and International Documentary Conference from June 22–27, 2010.

    Find out more.

    Other resources to reveal your creative side.

    Rob

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  • Meeting a curling Paralympian

    The Paralympics start on Friday. Last week I mentioned that we had gotten to know one of the curling team members, the only woman as a matter of fact -- Jacqui Kapinowski.

    Four months to the day after she began learning the sport of curling, Jacqui Kapinowski won her first Paralympic Bronze medal in wheelchair curling -- the first ever medal in the event for the USA. A year later in 2009, the team placed fourth.

    “We’re hungry this year,” says Kapinowski. “Placing fourth made us hungrier!” Similar to shuffleboard, wheelchair curling consists of one tournament where players take turns pushing stones down a sheet of ice towards a series of circles. The team with the most points, or stones, closest to the center circle wins.

    Read the rest.


    Rob

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  • Actor/Writer Danny Arroyo becomes Foundation ambassador

    We are welcoming actor/writer Danny Arroyo to our extended family as a Reeve Foundation ambassador. Arroyo, who won a “Best Actor” award at a film festival for his work in the indie drama, ''Chimera House,'' joins several Hollywood talents, including Daryl “Chill” Mitchell (a 2010 NAACP Image Award winner), Dave Annable, Odette Yustman, Dustin Nguyen, Angela Rockwood-Nguyen, and Wilmer Valderrama as ambassadors.

    All of them are committed to raising awareness of the Reeve Foundation’s efforts to improve the quality of life for those living with paralysis and their caregivers, and its Paralysis Resource Center -- a critical component of its mission.

    “The reason I am an actor today is because of Christopher Reeve,” said Arroyo. “I caught the ‘acting bug’ after seeing an interview with Chris about playing ‘Superman;’ and then, watching his movies... I was hooked. Chris to me as a kid growing up was, and always will be, the comic icon Superman. He’s even in my demo reel!

    (Photo: Danny Arroyo getting ready to fly like Superman just before his celebrity skydive with the Army's Golden Knights.)

    Read more about Danny and our other ambassadors
    .

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