Posts Tagged ‘SCI’

Chase the Vision, Not the Money, Part 2

June 24, 2013

Last year I published a blog post titled “Chase the Vision, Not the Money“, written in the wake of revelations about the Susan G. Komen Foundation and its questionable funding decisions and political motives. A little over a year later, we find that these same dubious practices run rampant in the spinal cord injury community at the Rick Hansen Foundation.

David Baines, a respected reporter at the Vancouver Sun, scrutinized financial statements from RHF, statements that were released only after pressure from the newspaper. In his article, “Behind the Hansen Foundation“, Baines shares his discoveries, including:

  • Exorbitant spending and huge losses incurred with last year’s 25-year anniversary celebration of the Man in Motion tour;
  • A tax credit of $1.8 million issued to Rick Hansen for the donation of his naming rights;
  • Excessive CEO (Hansen) compensation in the form of both salary and fringe benefits.

The list goes on, and I encourage you to read the full article. I was left feeling angry, disappointed, and ultimately sad to learn that this leading SCI charity, with its massive resources and name recognition, exhibits such poor financial stewardship of precious dollars.

Those of us in the SCI community should be thankful to Baines for this excellent job of reporting. We should also learn our lessons. This article illustrates once again the importance of doing one’s own due diligence when choosing which charitable organizations to support, a diligence to include:

  • Educating yourself about research science;
  • Examining where charities are investing the dollars supposedly allocated to research;
  • Studying financial reports to determine how your donations are being spent.

Performing due diligence does not take a lot of time in the Internet age. The U2FP website is filled with resources to help beginners and veterans learn more about research science. In the U.S., nonprofits are required to make their tax returns available to the public, and most can be accessed at the Foundation Center‘s 990 Finder page. Charity Navigator provides ratings for charities in the U.S. with revenue over $500,000.

While the Hansen story is shocking and disturbing, perhaps the silver lining will be increased scrutiny from donors, both public and private, when contributing to charity. In the world of spinal cord injury, it is imperative that individuals make educated investments of valuable time and money, and that government increases its oversight of the funding it provides.

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The Big Picture

August 30, 2012

For most of the summer I have been writing content and assisting with the design of our new U2FP website. At times tedious, at times a labor of love, this exercise triggered a lot of reflection on how we have grown and evolved in the 5 years since our last website remodel.

For me personally, my U2FP journey has been a hugely educational experience on many fronts:

  • Understanding the science. This is an ongoing process, especially in such a complex field as neuroscience and regeneration. It’s not unlike learning about all the complications of a spinal cord injury. Slowly but surely we grasp the terminology, the sometimes grim realities, and finally a sense of what it will take to make things better.
  • Assessing the landscape. Where does curing paralysis stand in the broader field of medical research and translation? When we identify good science, how do we attract investors and bring it to clinical trial? How can we make our cause a priority amongst such worthy competition? The answers to these questions change with the financial and political winds.
  • Connecting with the community. This is far and away the most rewarding aspect of my job and the most energizing. It’s easy to get bogged down in the daily details of managing our programs – trying to catch up on emails, attending to the minutiae of organizing a conference, satisfying the various regulatory requirements. Just when I think that’s what my job is, I’ll hear from or read about or meet someone living with a spinal cord injury who is working so hard to make the very best out of a tough hand.

It’s a welcome reminder that in the end, our mission and our goals are about people. Less than 2 years after my son’s injury in 2002, I remember an “ah-ha” moment when I thought about all the extraordinary people we had met on the post-SCI journey. In order to make the best out of this life, you have to operate at a much higher level of purpose. You have to practice positive thinking on a daily basis; it’s so easy to falter.

For today, as we celebrate the launch of our new website, I want to take a moment to thank all of the people I have met along the way: for your courage, your determination, your perseverance, your grace, and for enriching my life.

Hope vs Hype

July 12, 2012

I hear and read it over and over again – cynicism in the spinal cord injury community when talking about a cure. I understand where it comes from.  Decades of time and billions of dollars that so far have not delivered a viable regenerative therapy. In my own experience, I remember hearing promises of “another 5 years” as a reasonable timeline to anticipate cures. That was 10 years ago.

Today’s world of constant media bombardment only fuels the hype. Almost daily we read stories of breakthroughs that may “one day” give paralyzed people the ability to walk again. So far, none of those predictions have come to reality.


It’s not just the media that misleads us. Around the world there are doctors and clinics offering stem cell and other specialized treatments, costing tens of thousands of dollars, and so far showing no verifiable efficacy. I have seen people with SCI work hard to raise the money for these therapies, head overseas with high hopes, and return home with nothing to show. They are reluctant and even embarrassed, understandably, to tell their supporters that the treatment failed.

And finally, we have some scientists who exaggerate the potential of their research, most often in an effort to raise more funding dollars. I find this to be the most unethical of the misleading information. The spinal cord injury community is a very vulnerable population. Many are desperate for any positive news that would give them hope of being able to breathe on their own, or use their hands. If they’re not yet cynical, they will hang on for dear life to a scientist who promises recovery.

In fact, we don’t have any therapy at this point, other than intensive exercise to promote neuroplasticity, that offers meaningful recovery of function. How do we fight our way through the hype to find good science worthy of our support?  The very best way is to take the time to read and understand published scientific papers showing verifiable data. Not all of us have the time or mental capacity for that task, however; we need trusted community leaders who will sift through the data and advise us.

Fortunately, this is the path that Unite 2 Fight Paralysis has chosen. We know that as a community we become empowered through education. We offer resources that will bring everyone up to speed on the science that as of today truly holds the most promise. For starters, visit U2FP Board Member Chris Powell’s SCI Research and Advocacy blog, and plan to join us in Irvine, California for the 7th annual Working 2 Walk Symposium.

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.

Home for the Holidays

December 28, 2011

On December 1, 2002, my son suffered a C6/7 spinal cord injury when a wheel came off an oncoming truck and landed on top of his pickup.  9 years later, having graduated from law school and secured a full-time job, he came home to celebrate the holidays with his family.  Together we reflected on the remarkable journey he had taken to work his way back to physical, emotional, and financial independence.

If there is such a thing as being lucky in the wake of a spinal cord injury, it applies to my son.  Had his neck broken just a few millimeters higher, he would not have the use of his hands or arms.  He used every ounce of his energy and determination to achieve his goal of independence, but still could not have made it without the extraordinary support of his family, friends, community, and numerous strangers.  Such good fortune does not fall to many who are stricken with SCI.

While we celebrate and take pride in his accomplishments, we know that he represents the minority of those living with SCI.  According to the National SCI Statistical Center, at 20 years post-injury, only 35% of persons with a spinal cord injury are employed.  This statistic is not just a function of injury level; the employment rate for people with paraplegia is only slightly higher than for those with tetraplegia.  There are numerous social, psychological, and economic barriers that conspire to keep persons with SCI out of the work force.

The unemployment rate is but one of many “invisible” secondary complications of spinal cord injury.  While the media is full of “inspiring” stories about people living with SCI, much less is said about what goes on behind the scenes.  No one wants to start a pity party, but if we’re going to achieve “cure consciousness”, we need to speak the truth about:

  • the loss of bowel, bladder & sexual function;
  • psychological trauma & suicide;
  • loss of time, productivity, and often independence;
  • a host of other issues that accompany spinal cord injury.

For every heartwarming story in the media, there are hundreds more untold about people and the daily realities of SCI that no one ever sees.  The public is often led to believe that one can achieve recovery through hard work and determination alone; if this were true, the majority of survivors would be up and walking around.

I am extremely proud of what my son has accomplished since his injury, and at the same time appreciate that it was made possible by some good fortune and a remarkable support system that augmented his efforts.  I also know that he would readily embrace the opportunity for regenerative therapies that could give him back a healthy body.


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