Uniting and Fighting

Oh to have more time to write this blog. Today, however, I’m going to put all other tasks aside to share my thoughts about our fantastic 9th Annual Working 2 Walk Symposium. Each year I come away overwhelmed with impressions, emotions, and ideas, and 2014 was no different. But this year the sum of my feelings was decidedly more positive and optimistic than in the past.

For starters, our speakers from the research sector did an outstanding job of presenting their scientific work in terms the audience could understand. And . . . several shared therapies that are actually being performed on humans either in the clinic or in clinical studies. We’re starting to move on from rats to people. Kate Willette’s Live Blog from the conference recaps the presentations, and before too long we will have videos available at our online Video Library. Near the end of the conference, an attendee I had not yet met pulled me aside to say, “I’m a physician, and have been telling people for 25 years there is no hope. Now I know better.”

Secondly, we had our highest number ever of registered attendees, and of those our highest percentage of people living with paralysis. Collectively they brought an extraordinary level of enthusiasm, knowledge, and forward-looking energy to the proceedings. The Advocacy Breakout session lasted well into the evening, and the discussion continues today.

Marilyn Smith, Peter Wilderotter, and Kate Willette announce the launch of Kate’s new book.

The Rick Hansen Institute sends a team of scientists & advocates to the Symposium.

Ida Cahill talks with advocates after announcing Conquer Paralysis Now’s SCI Challenge.

Our absolutely amazing emcee, Barry Long from Pushing Boundaries.

What really sticks in my mind, though, is the sense of unity and common purpose that developed over the course of two days. Stakeholders from across the spinal cord injury spectrum came together with open hearts and inquiring minds, and spoke honestly and respectfully of their goals & challenges, strengths & weaknesses, as they renewed their commitment to fight for a future without paralysis.

As Unite 2 Fight Paralysis enters its 10th year of existence, it finally feels like we are starting to live up to our name. U2FP was built from the bottom up, created from the heart and strengthened by the blood and sweat of those who live the life; it has taken a while to gain credibility. After this year’s Symposium, I have renewed faith that together, united, we can win the fight.

The World Cup

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.

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

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?

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.

We 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

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.

“Back 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.