Archive for the ‘wheelchair’ Category

Enough With the Rats!

October 30, 2011

Working 2 Walk in Rockville was such a rich experience, I’ve had trouble deciding what to write about first.  For today, let’s look at the message of our international advocates, all of whom traveled great distances to meet the scientists at W2W and express an urgency to make the leap from working on the spinal cords of lab rats to those of humans.

Martin Codyre (Ireland), Harvey Sihota (United Kingdom), and Dennis Tesolat (via Skype from Japan) spoke frankly about what it’s like to sit in a chair and observe:

  • Promising therapies such as cethrin and hypothermia that never make it to Phase III trials because of financial and regulatory hurdles;
  • Large SCI organizations that use the word “cure” in their promotional materials, but spend relatively little on restorative research;
  • The lack of research attention paid to chronic injuries, when arguably that population has the greatest need and potentially the greatest return on investment;
  • A perceived lack of collaboration, commitment, and coordination amongst the stakeholders to push a product to market.

Of course it’s our goal at Working 2 Walk to motivate members of the SCI community to move beyond observation and into action, which became the focus of a lively exchange between the panel members and audience.

A few of the more powerful comments:

“I think that what we’re going to do is take up our own part of the job. What is it? If you’re paralyzed and you have a part time job, your full time job is moving this along. If you’re paralyzed and you have a full time job, your part time job is moving this along.”

“A lot of us are speaking about hope, and that’s awesome, but we need to talk about action.  I heard Jerry Silver say ‘I’m fine.’  Well, I’m happy that you are fine, but I am not fine.  I’m not here to criticize, but I want to know how we get well. Let’s start with a goal: we want clinical trials in two years and manage toward it.”

“We could be much further along toward a cure, which I define as getting out of the chair. We can’t be happy just with bowel and bladder, not that we all don’t want that. We have to take what we can in the short term but look toward the long. We need to push for a big change, or we’re all going to die in these chairs.”

Working 2 Walk itself is an effective catalyst for change, bringing together scientists who in the presence of consumers may be more motivated to collaborate, building the knowledge base of advocates, and creating unique networking opportunities.  But more needs to be done on a year-round basis.

Translation of therapies from the laboratory to the clinic is often called “The Valley of Death”.  In a recent Science Daily article about stem cell treatments for spinal cord injuries, Dr. Michael Fehlings noted that “At this time, a strong patient advocacy base would likely help provide momentum to help translate current research into clinical applications.”  Let’s get going.

Why Working 2 Walk

July 29, 2011


Last week U2FP announced our lineup of confirmed speakers for this year’s Working 2 Walk Science & Advocacy Symposium.  It’s an impressive group and features the names of scientists and business leaders who have been making news in the world of SCI cure research over the past year.

Back in 2006 when we organized our first conference, we had no idea whether anybody would come.  But as we started planning, we gave a lot of thought to picking an appropriate name.  We didn’t call it “Wishing 2 Walk” or “Hoping 2 Walk” or “Dreaming 2 Walk”; we chose “Working 2 Walk”, because we believed that people living with a spinal cord injury could roll up their sleeves and contribute to the cure effort.

Our purpose at W2W is to bring together all of the stakeholders in the march toward cures and create opportunities to exchange knowledge, strategies, and priorities.  Our research scientists continue to work hard at solving neurological problems at a molecular level.  Biotechs have begun to invest in promising science and the clinical trial process that will bring it to market.  A handful of advocates are opening the doors of communication that will hopefully lead to enlightened decisions on the part of policymakers.

If you’re sitting in your wheelchair wanting your healthy body back, you may be thinking that none of this is happening fast enough.  You’re right, but unfortunately, bringing cures to reality is not just about the science.  It’s just as much about the financial and regulatory hurdles that must be overcome, and I think this is where patient advocates have a real opportunity to make a difference.  We’ll talk about how at Working 2 Walk.

Keeping an Open Mind

July 8, 2011

At this stage of the game in searching for curative therapies, it’s essential that advocates keep an open mind about the possibilities.  We are just BEGINNING to see laboratory science move into human clinical trials, and to date we have not seen demonstrative proof of any therapy that is actually repairing the spinal cord.  Chris Powell, another warrior in our ever-growing network of moms advocating for a cure, put it best:

“I’m a hard core SCI advocate in the purest form.  I have no preference on which type of cell, growth factor, inhibitor or country to discover. I have no pre-concieved notion about the ultimate SCI cure.  I consider it all nothing more than a calculated dog and pony show until something is actually proven safe and restoring function.  I am willing to listen and learn about the science and others ideas. I am willing to advocate for a sci cure by helping in any way possible to get the therapies to clinical trial so we can find the very best and not waste time or money on anything that’s going downhill.  I remain open minded and interested.”

As Cure Warriors, our immediate goals are:

  • Learn, learn and learn some more about the science – Working 2 Walk is a fantastic, affordable opportunity to educate yourself;
  • Follow the progress of clinical trials and push for more.  This is where the rubber meets the road, and we’ve got to speed up the pace of clinical trials if we’re ever going to find out what works and what doesn’t.  U2FP’s Clinical Trial Table is an excellent resource to get you started;
  • Armed with knowledge, get vocal.  Talk to your communities and the media.  Question the scientists, the funders, and the regulators.  Support the best science and the strategies that will accelerate the achievement of a cure.

The Technological Cure

May 31, 2011

In recent weeks we’ve seen the headlines “Paralyzed Student Walks at Graduation” and “Paralyzed Bride Walks Down Aisle”.  In these stories and others like them, the paralyzed person is able to “walk” using a robotic exoskeleton and computerized brain signals.  If you’re a fan of the television show “Glee”, you probably saw the December episode where Artie received a “ReWalk” for Christmas and miraculously got up and walked.

Considerable time and money is being invested in the pursuit of a “technological” cure.  When I talk with people who have spinal cord injuries, many of them look with disdain at this approach.  They don’t want to have to “flip a switch” or wear an exoskeleton in order to regain function.  They believe that our resources should instead be directed at stem cell therapies that hold the promise of regeneration and a true repair of the spinal cord.

What do you think?  This coming weekend I will attend the Spine Symposium and State of the Science portions of the annual International Spinal Cord Society (ISCoS) meeting.  The organizers are asking for consumer input to inform a research agenda for the next 10 years.  As we all know, research into curing SCI is massively underfunded.  Even as we work to increase that funding, where should we spend the precious time, money and energy that is available?

Earthquakes & Wheelchairs

March 16, 2011

It took me a bit longer than planned to get back to this blog. . . . meanwhile we have seen the catastrophic earthquake and tsunami strike Japan and dominate the news.  My first reaction to the disaster was “What about the people in wheelchairs?”.  It’s always my first thought now when stories break of this nature.

How do you get to higher ground in a matter of minutes?  Only if you’re lucky enough to have someone to carry you.

How do you crawl your way out of a pile of rubble if you’re paralyzed?

If you survive, how do you push your wheelchair through the chaos?

How do you get the medications and equipment that your life may depend on?

Human need is enormous after a calamity like the one in Japan.  For many of the wheelchair users that I know, one of their greatest fears is to be caught in such a natural disaster.  To all those in Japan who may be facing the challenges of survival in a wheelchair, know that we are thinking of you . . .

Marilyn


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