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.

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.

The Big Picture

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

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.