Archive for the ‘stem cells’ Category

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.

Giving Thanks

November 20, 2012

It’s been nearly 3 months since my last blog post. That’s what attending to the details of our annual Working 2 Walk Symposium will do. While I love the knowledge, the energy, and the connections generated by the conference, it’s nice to have the chance to drop back to a slower pace and take time for reflection.

Our family shares in a very special Thanksgiving tradition. When we first moved to the beautiful Hood River Valley at the base of Mt. Hood in Oregon, we quickly made friends with our neighbors on the Dee Highway. We celebrated our first Thanksgiving together in 1979. A core group of 5 families began to generate offspring, some moved away from the Dee Highway, but as the families grew and dispersed, the shared Thanksgiving dinner continued.

Mt. Hood towers over the Hood River Valley

This holiday is more revered by our family than the Christmas/Hanukkah period. We look forward to spending the day with our dearest friends who we have known for most of our lives. We have supported each other through life’s travails of death, divorce, and catastrophic injury. This year’s celebration is one of milestones:

  • It was on Thanksgiving weekend 10 years ago that a flying wheel landed on top of my son’s pickup, and changed his and our lives forever. The day after his accident, two of the Dee Highway women drove 200 miles to be at our side in the hospital. Not coincidentally, they were also the midwives who delivered him at birth. Our friends provided the foundation of a support system that helped Noah navigate his way to a successful career as an attorney working for the EPA in San Francisco.
  • After 31 consecutive years of organizing this annual get-together, the “matriarchs” decided it was time to pass on the responsibility. Last year’s event was led by the “patriarchs” (dads), and this year for the first time the 2nd generation takes over. Our son Isaac and his wife will host a gathering of 30, achieving a milestone that ensures our wonderful tradition will continue for years to come.

I write this story to remind myself of what we have to be thankful for, and also what a world of difference a support system makes when one suffers a spinal cord injury. It is often the determining factor in whether a survivor adjusts well to post-SCI life. Unfortunately, the strength of one’s support system is often left to chance.

At Working 2 Walk I met people who had traveled to the conference from great distances. Those with high-level quadriplegic injuries were accompanied by family members and/or dedicated assistants. As I said in my opening remarks, they were the lucky ones. For every SCI survivor who attended, there are thousands more who would never have the opportunity because they lack such a support system.

I am thankful for our lifelong friends and family who anchored my son’s support system. I am thankful for his self-determination that worked in tandem with his supporters to bring him where he is today. And I am thankful for the opportunity to work with members of the SCI community, who practice persistence, self-discipline, courage, and grace on a daily basis.

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.

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.

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.


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