Back to the Future

Thanksgiving is my favorite holiday; the name itself verbalizes an action that we should all practice more frequently. Our personal family tradition is to gather with a group of friends we have known for over 40 years, and this Thursday marks our 35th annual celebration. Ironically, it was on Thanksgiving weekend 12 years ago that a flying wheel broke my son’s neck and introduced all of us to the world of spinal cord injury. Our second family, the ones with whom we share Thanksgiving, were the first responders and have been loyal supporters in the years since.

That Thanksgiving event forever changed my life, and in time led to the founding of Unite 2 Fight Paralysis. I am NOT thankful for my son’s injury, don’t believe it happened for a reason, and am not here to inspire anyone. But once SCI came into our lives, it became clear that I should use the skills I have to fight its devastating effects. I am grateful that U2FP has given me a way to do that.

Last week I attended the “Partnering for Cures” conference in New York City. As a first-time attendee, I was admittedly overwhelmed by the level of brilliance, passion, & expertise in the room. Presentations and panel discussions covered every stop along the continuum from basic research to clinical practice. Patients, advocates, funders, and regulators joined in lively conversations about how to achieve results. I met representatives from a variety of disease groups, including many working on behalf of so-called “rare diseases” with small patient populations as in SCI.

Link to Agenda & Videos from all of the Partnering for Cures Sessions

I am still processing all of the ideas and information from the conference, but my mind keeps coming back to the overriding theme of “patient-centeredness and participation”. We have entered an era where, thanks to patient demand, we are gaining a more influential voice in decision-making, from what research to fund all the way to designing clinical trial endpoints. It is now our responsibility to expand our knowledge and commitment in order to provide educated input to these processes.

What role can U2FP play in this evolving paradigm? In the world of spinal cord injury, the patient movement is just beginning. For a variety of reasons, other disease groups are farther along and many have successes to report. We have the opportunity to learn from their achievements as we chart a path for the future.

To date U2FP has dedicated most of its resources to patient education. And BTW for those of you who object to the word “patient”, if you want to be part of this movement you’d best get used to it. As one P4C panelist said, “Nobody wants to be a patient”, but I daresay it’s not worth quibbling over. Spend your energy learning about the details of SCI and what it will take to repair and recover.

U2FP has a bucket list of possible projects to get this community moving toward greater participation, including things like expanded education, data collection, increased partnering, and organizing advocate activities. We can’t undertake any of these projects without your help, however. At the moment our resources are stretched to the max, and we need more funding to take on anything new.

As we enter the season of “Giving” and “Thanks”, please consider donating to U2FP so we can continue to expand our services and lead the SCI community toward 21st century cures. Our “Giving Tuesday” (Dec. 2 ) campaign is now active, and you can support U2FP year-round (and especially at the holidays) by using our Amazon Smile gateway for all of your Amazon shopping.

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.