visit their blog at http://unite2fightparalysis.wordpress.com/
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.