Shoulders to the Wheel

June 7, 2012

Prior to the invention of the automobile, people moved from place to place in carts, carriages & wagons.  If the  vehicle became stuck in the mud, it was common for the passengers to get out and work collectively to push it out, literally putting their “shoulders to the wheel”.

The image is a very apt metaphor for the challenges we face in the cure movement.  I believe we are now “unstuck” from the notion that axons cannot regenerate and there is no hope for curing paralysis. We still have a lot of “pushing” to do, however, to get our wagon all the way up the hill.

Putting your shoulder to the wheel means to put full effort into the task until it is completed, to work persistently and wholeheartedly. That’s what it will take to reach our goal, and the more shoulders we have, the faster we’ll get there.

Over the last few months, we’ve seen a couple living examples in the SCI community of advocates demonstrating this kind of effort. Out in California, Don and Roman Reed have been unwavering in their determination to renew funding for the Roman Reed Spinal Cord Injury Research Act. This little bill has provided millions of dollars of support for the the Reeve-Irvine Research Center, but was a victim of budgetary cuts during the recession.

Undeterred, Don & Roman set forth to create an alternate funding source through an add-on to traffic tickets.  After several months of lobbying and negotiating, and aided by community e-mail campaigns, they are close to achieving their goal. You can learn how they did it and help them get to the finish line by following Don Reed’s blog here.

Another one of our powerful shoulders belongs to Dennis Tesolat. Talk about persistent! Several months ago, Dennis and a few of his friends asked The Rick Hansen Foundation a very simple question, “How much are you spending on a cure?”  I wrote about his efforts to solicit a satisfactory answer in last month’s blog entry, and regret to report that RHF did NOT offer any kind of response at the recent Interdependence conference.

That won’t discourage Dennis. Rather it will empower him to seek more community support, to reach out to the media and other organizations affiliated with RHF, and to continue his dogged persistence until we have an answer as to how the Foundation is working to achieve “a world without paralysis after spinal cord injury” (the RHF mission).

Don, Roman and Dennis don’t get a lot of media coverage for their work. They’re not flashy or self-promoting.  They don’t whine about life with SCI, or complain about the frustrations inherent in the glacial pace of our political and regulatory systems. They just put in the work from day to day, putting their shoulders to the wheel, staying true to the course, and keeping their eyes on the prize.

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Speaking Truth to Power

May 7, 2012

If we’re ever going to gain traction as Cure Warriors, we’ve got to speak out to the various individual and organizational leaders in the spinal cord injury community.  Thanks to the persistent efforts of Dennis Tesolat (also known as Mr. “Stem Cells & Atom Bombs”), there is a respectful yet pointed appeal to the Rick Hansen Foundation (RHF) that as of today boasts over 700 signatures from around the world.

The Foundation has long proclaimed its vision to be “a world without paralysis after spinal cord injury”.  That’s our goal, too, so several months ago Dennis and a few of his friends sent RHF’s CEO a simple request:

  • “Please outline your spending on translational research for central nervous system regeneration, i.e. a cure for spinal cord injury.”

The response failed to outline any specifics other than what’s available in their annual report, i.e. – “81% goes to charitable programs.”  Dennis wasn’t satisfied, so he decided to get organized and continue to ask questions.  He asked for more details on RHF’s spending, and for Rick to publicly answer the questions at next week’s Interdependence Conference of SCI leaders.

I imagine most of my readers have already signed the appeal, but if not, there is still time if you do it today.  It’s an easy, one-click process from the Stem Cells & Atom Bombs website.  Follow this link.

The Rick Hansen Foundation earns annual revenues in excess of $20 million, 71% of which comes from Canadian national and provincial government funds.  This is an extraordinary amount of money, and with these types of resources the Foundation should respond to the wishes of the SCI community.

We respect the work that RHF has done to improve accessibility and quality of life for people living with SCI.  At this point in time, however, with so much promising regenerative research on the cusp of translation, it’s time for the Foundation to turn its attention and its resources to the achievement of a cure.  As survivors of spinal cord injury and family members, we have the right, and even moreso the responsibility, to speak up to those in power at the Rick Hansen Foundation.

Why Are We Still Paralyzed?

April 11, 2012

It’s a pretty basic question for a Cure Warrior.  As we ponder the multifaceted answers to that question, we begin to grasp the enormity of the task in front of us.   What are the biggest challenges?

  1. Scientific: Figuring out how to regenerate the appropriate pathways that will bring about functional MOTOR recovery in the chronic injury.  As we begin to experiment with therapies in humans, we’ll then need to identify the best DELIVERY method(s).
  2. Translation: Okay, we’ve had success with a couple of therapies in the laboratory.  How do we raise the money, get regulatory approval, and enroll enough patients to run a human clinical trial?  As a case in point, the Geron trial proved to be a massive and ultimately failed undertaking.  They ran out of money and couldn’t enroll sufficient patients before they could prove much of anything.
  3. Marketing: Any investor looking to bring a therapy to market had better have an excellent business plan, or the therapy will never reach widespread use.  We have seen this play out with the introduction of several neurotechnology devices.  Many of these tools have proven to be beneficial for clients, but implementation is hindered by lack of awareness and/or failure of insurance companies to cover.
  4. Apathy: The SCI community suffers from a lack of focus and energy when it comes to pushing for curative therapies.  We all know how living with SCI drains one’s physical, financial, and emotional resources.  And to date, we haven’t seen anything in the way of a tangible scientific breakthrough to galvanize the troops.

How can you or I address these challenges in a meaningful way?  First and foremost, and I know I’m repeating myself, STUDY THE SCIENCE!  For starters, you’ll need to understand the terminology.  The more reading you do, the more researchers you talk to, the more leaders you network with, the more you will get comfortable in the conversation.

Where to start?  Check out the U2FP Clinical Trials Table for continuous updates on what’s happening in the field and an introduction to acronyms.  Read our lay-friendly reports from recent lab visits with top researchers.  Join us at the Working 2 Walk Symposium in Irvine, California, this November.

We need people with knowledge and passion to join this fight and commit to the long-term.  If we can invent the atom bomb, if we can put humans on the moon, if we can map the human genome, surely we can repair the injured spinal cord.  It’s all about priorities.  Making a difference starts with us, and I look forward to the day when we don’t have to ask the question, “Why are we still paralyzed?”

Our Brother’s Keeper

March 4, 2012

Several years ago I read a book titled “His Brother’s Keeper” by Jonathan Weiner.  It’s the true story of one man’s race against time to try and find a cure for his brother, who was stricken with ALS at the age of 29.  The book is subtitled, “One Family’s Journey to the Edge of Medicine”.  Indeed, this is where we must travel if we’re going to solve the neurological puzzles of paralysis from spinal cord injury.

As a writer, Weiner has an amazing ability to explain the complexities of neuroscience in terms that can be readily understood by a lay reader.  He also does a terrific job of portraying the impatience and urgency that patients and family members feel when confronted with the glacial pace of advancing therapies from bench to bedside.  The story repeatedly raises the philosophical question of how best to advance science, and towards the end quotes Art Caplan, a bioethicist at the University of Pennsylvania:

“Should the pace of medical research be determined by people desperately afflicted and their kin?  Is that the best way to move the science?  My argument would be no.  Just as it’s hard to do the best science when you’re heavily invested and have a financial interest in what’s going on, it’s very hard to interpret results when your vision is completely clouded up by love of your subject.”

Caplan’s point is well taken.  In our own SCI community we have seen many patients spend tens of thousands of dollars on unproven therapies that provide little or no benefit.  At times advocates have allowed passion to drive their research investments rather than reason.

On the other hand, to my knowledge Caplan is not living with a debilitating or life-threatening condition.  It’s frustrating and tiresome to sit in your wheelchair and listen to scientists, funders, and regulators counsel patience.  And of course we have the problem of our big-name charities losing sight of their initial purpose (see my previous post, “Chase the Vision, Not the Money”).

It’s time for the stakeholders in the SCI cure effort to keep watch over each other:

  • For researchers to share their scientific results openly and honestly;
  • For advocates to educate themselves about the science of regenerative medicine;
  • For charities and patient advocacy organizations to operate with transparency and purpose;
  • For regulators to consider the voice of the patient when evaluating risk and reward;
  • For those living with SCI to speak up and put a face on spinal cord injury.

Kudos to Dr. Keith Tansey for writing so eloquently on this subject here.  I met Dr. Tansey at Working 2 Walk in 2011, and I know that he is a compassionate professional who understands the frustrations of those living with SCI.  He, too, believes that the science will advance more quickly and safely if we as a community work together, with ongoing, open dialogue and a sense that we are “Our Brother’s Keeper”.

Chase the Vision, Not the Money

February 3, 2012

I had no sooner finished posting this blog entry than the Komen Foundation announced that they were reversing their decision on funding Planned Parenthood.  No matter – the damage has been done and there are still lessons to be learned.  Read on.

This week the Susan G. Komen Foundation announced that they would no longer provide funding to Planned Parenthood for breast cancer screenings.  The decision sparked a huge firestorm of outrage as well as some serious investigative journalism into the reasons behind the defunding.  It’s a revealing story that illustrates the perils of prosperity and offers important lessons for charities and donors alike.

Komen is practically a household name, and its ubiquitous branding with pink ribbons, pink shoes, pink gloves, etc., is the envy of patient advocate organizations worldwide.  Like many advocacy groups, it started with a personal connection to a particular disease/condition.  When her older sister Susan died of breast cancer in 1980, Nancy Brinker Goodman founded SGK in her honor. 30 years later, Komen has annual earnings of nearly $400 million.

Komen has unquestionably raised awareness about breast cancer and pumped millions into research and public health education. And yet, in terms of finding a cure there really isn’t much to show for the effort.  Komen’s own website reports that the incidence of breast cancer has actually risen slightly over the last 30 years. During the same timeline, the mortality rate (time of diagnosis to time of death) has decreased somewhat for white women, but shows a slight increase for black women.

In their highly sophisticated marketing campaigns, they brand themselves as “Susan G. Komen for the Cure”, raising money via the “Race for the Cure”.  Unfortunately, rather than chase that vision they’ve fallen prey to the allure of money and the corruption of politics. Komen has built the kind of empire that is seen all too often in the “charitable foundation” arena; a marketing machine whose lavish salaries and political agenda drive its decision-making.

When you’re trying to keep a nonprofit viable it’s easy to lose sight of what got you started in the first place.  Everyone needs money to maintain and expand valuable programs.  But when your priorities shift from chasing the vision to chasing the money, the people and purpose you are supposed to be serving can get lost along the way.

We don’t know where Komen is headed from here, but nonprofit leaders would do well to take a lesson from this enormous blunder and the story behind it. Donors would be well-advised to take a hard look at the charities they choose to support, and do the research to find out where their money is actually going.  In the words of The Guardian’s Lizz Winstead,

“Last I checked, a pink breast cancer awareness toaster isn’t a substitute for affordable chemotherapy.”


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