The World Cup

June 11, 2014

begins tomorrow. It will be “kicked off” by a teenager who has a paraplegic spinal cord injury, outfitted in a robotic suit. The event has created a stir in the media and caused a firestorm of debate in the spinal cord injury community.

The Brazilian government provided $14 million to fund development of the suit. In the world of medical research, this is not an enormous sum of money, but it certainly makes a difference in the underfunded area of spinal cord injury.

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Those who support research and development in the area of robotics argue that it brings us closer to recovery of locomotion, and any sort of upright mobility is healthier than spending all day in your wheelchair. Many believe that cures via the path of regenerative medicine are so far away that they will not see a benefit in their lifetimes, whereas robotics offer more immediate promise. As for the World Cup event and given that spinal cord injury receives so little media attention, they claim that any publicity is better than none.

On the other side of the coin, proponents of a focus on regenerative medicine argue that the potential for robotics is much more limited: The devices will not help those with quadriplegic injuries, and they do not bring recovery for secondary complications like bowel, bladder & sexual function, neuropathic pain, and more. They would say that spending vast amounts of money on robotics at the expense of regenerative medicine only helps to keep people paralyzed.

What do you think? Should we spend our precious dollars on compensatory devices or repairing the spinal cord?

 

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.

What is a Cure?

March 12, 2013

Unite 2 Fight Paralysis uses the tagline, “Voice of the Cure”.  What does the word “cure” mean to us?   Our vision of a cure includes:

  1. Restoration of one’s fully functional and healthy body, including relief from pain and spasms, return of bowel, bladder and sexual function, and recovery of normal sensation in addition to motor control.  Once cured a person should be able to live independently, free of assistive devices, caregivers, catheters, etc.
  2. Belief that curative therapies will come in stages, and support for advancing research into each stage as it becomes more promising.
  3. Understanding that recovery will come through combinations of therapies that may vary just as much as the nature of spinal cord injuries.  To this end we promote and support collaborations amongst scientists, investors, advocates, clinicians, and regulatory agencies.
  4. Commitment over the long term to successive stages of recovery, refusing to be satisfied until all bodily functions are restored.

ManRunning150We fight for those who have lost the most, and for whom regeneration is the only pathway back to a healthy body and productive life. Let us never forget about those with complete injuries and little or no return, those who have no family support and are shuffled off to nursing homes, those on ventilators who require 24/7 assistance, those who do not have the time and/or money to spend the hours necessary to maximize recovery.

We don’t want to start a “pity party”, but we do want to increase awareness of these realities. Decision-makers need to understand that paralysis is a progressive and burdensome condition, that research science shows great promise and needs financial support, that restoring function will save millions of dollars for SCI survivors, their families, and society.

Getting Attention

February 5, 2013

Just 10 days from now the staff and Board members of Unite 2 Fight Paralysis will gather for a combination board member training, advocacy workshop, and strategic planning session. Because we are scattered around the country, we try to meet for a weekend retreat like this every couple of years. It gives us a chance to evaluate all aspects of our operation as well as build strategies, momentum, and energy to carry our vision into the future.

As lead facilitator for the weekend, I’ve been doing a lot of reading in preparation. Sometimes the job we’ve undertaken (achieving a cure for paralysis after spinal cord injury), seems so immense that it’s hard to know where to focus. Just in time, a colleague of mine prepared a summary of “Back to Basics“, with pointed takeaway questions for the SCI cure movement.

SurvivePlague1Back to Basics“, written by Michael Manganiello and Margaret Anderson, chronicles the rise of the HIV/AIDS advocacy movement, considered to be the finest, most successful model of patient advocacy in our history, one that turned AIDS from a death sentence into a manageable condition in just a few years.

The AIDS epidemic was truly a matter of life and death, creating a motivation and urgency that drove patient advocates. What began as an emotional, grassroots reaction to a dire condition blossomed into an effectively organized, educated, and well-constructed movement with lessons for all of us.

It’s revealing to note that the very first issue addressed by AIDS advocates was getting ATTENTION, or “creating the will to transform policies”. In truth, we are still in our infancy in bringing attention to the need for a cure. We are transitioning from the fight for disability rights and accessibility to the fight for a cure. We’re still trying to convince members of our own community, let alone the general public, that we can and should achieve a cure.

How do we start getting attention? The HIV/AIDS movement employed civil disobedience to great effect, but is that realistic for the SCI community where health and resources are so compromised? I think we can begin by taking ownership of the word “cure” and using it in all of our messaging and communications. We are trying to change consciousness, both internal and external to our community, and develop belief.

If you’re serious about cure advocacy, I recommend that you take the time to read “Back to Basics” in its entirety. At the same time, keep an eye out for a showing of “How to Survive a Plague“, the Oscar-nominated documentary about the HIV/AIDS advocacy movement. It is currently in limited release at theaters around the country.

Changing Consciousness

December 17, 2012

I’m not going to write about curing spinal cord injury today, not after the horrific events in Newtown. Like you, I am shocked and grieving and wanting to find a way to stop this. I’ve read a number of insightful and eloquent blog entries these past few days that have helped to clarify my own thinking. I see three major components in our society that contribute to mass shootings:

  1. Our attitudes and treatment options around mental illness. Perhaps you read the heartfelt, thought-provoking piece by Liza Long, “I am Adam Lanza’s Mother”. Ms. Long has a 13-year-old son who suffers from a mental illness that has her entire family living in fear, and despite their best efforts our health care system has not been able to offer any solutions. She knows her son is capable of a massacre on the order of Newtown.
  2. Violence in the media. I’ve been around long enough to witness a sea change in how violence is depicted in the media. It started back in the 60’s with the release of “Bonnie and Clyde”, where for the first time you saw on the screen people shot in the face at point-blank range. At the time it was shocking, but it sold tickets and started the inexorable march to the kind of senseless, gratuitous violence we now see portrayed in movies, TV shows, and video games. Whether we admit it or not, we’ve become totally desensitized to acts of violence in the media.
  3. Lack of gun control laws. It’s harder to buy a car or adopt a pet in this country than it is to buy a gun. Special-interest groups continue to rant about individual freedom and liberty as they refuse to acknowledge how lack of regulation holds all of us hostage to the fear of an assault rifle in the wrong person’s hands. Is this really what’s best for the common good?

At the end of the day, I find myself asking, “What can we do?” I can’t stand the thought that we’ll go through a week or two of grieving, and that will be the end of it. The opportunity is here to take on the challenge of changing consciousness. It’s the best way I can think of to honor the memory of the innocents who were slaughtered.

What if we chose to invest in services for the mentally ill, to agree as a society that we need to take care of this suffering segment of our population?

What if our media moguls agreed that the depiction of gratuitous violence was not healthy for our society, and decided to leave murder details out of their productions?

What if we demanded, at a minimum, a ban on rapid-fire weapons? In the face of the 2nd Amendment and a polarized Congress, I believe action on this front will have to come from a grassroots movement.

There is a precedent for this kind of action with Mothers Against Drunk Driving (MADD). It began with one woman’s heartbreak and grew to an effective organization that has seen drunk driving fatalities drop by 40% since its founding. They challenged a society that viewed drunk driving as acceptable, even laughable, and engineered a change in consciousness. We are long overdue for such a change in our attitudes toward guns, violence, and mental illness.


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