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.

Giving Thanks

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

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.

Why Are We Still Paralyzed?

It’s a pretty basic question for a Cure Warrior.  As we ponder the multifaceted answers to that question, we begin to grasp the enormity of the task in front of us.   What are the biggest challenges?

1. Scientific: Figuring out how to regenerate the appropriate pathways that will bring about functional MOTOR recovery in the chronic injury.  As we begin to experiment with therapies in humans, we’ll then need to identify the best DELIVERY method(s).
2. Translation: Okay, we’ve had success with a couple of therapies in the laboratory.  How do we raise the money, get regulatory approval, and enroll enough patients to run a human clinical trial?  As a case in point, the Geron trial proved to be a massive and ultimately failed undertaking.  They ran out of money and couldn’t enroll sufficient patients before they could prove much of anything.
3. Marketing: Any investor looking to bring a therapy to market had better have an excellent business plan, or the therapy will never reach widespread use.  We have seen this play out with the introduction of several neurotechnology devices.  Many of these tools have proven to be beneficial for clients, but implementation is hindered by lack of awareness and/or failure of insurance companies to cover.
4. Apathy: The SCI community suffers from a lack of focus and energy when it comes to pushing for curative therapies.  We all know how living with SCI drains one’s physical, financial, and emotional resources.  And to date, we haven’t seen anything in the way of a tangible scientific breakthrough to galvanize the troops.

How can you or I address these challenges in a meaningful way?  First and foremost, and I know I’m repeating myself, STUDY THE SCIENCE!  For starters, you’ll need to understand the terminology.  The more reading you do, the more researchers you talk to, the more leaders you network with, the more you will get comfortable in the conversation.

Where to start?  Check out the U2FP Clinical Trials Table for continuous updates on what’s happening in the field and an introduction to acronyms.  Read our lay-friendly reports from recent lab visits with top researchers.  Join us at the Working 2 Walk Symposium in Irvine, California, this November.

We need people with knowledge and passion to join this fight and commit to the long-term.  If we can invent the atom bomb, if we can put humans on the moon, if we can map the human genome, surely we can repair the injured spinal cord.  It’s all about priorities.  Making a difference starts with us, and I look forward to the day when we don’t have to ask the question, “Why are we still paralyzed?”

Our Brother’s Keeper

Several years ago I read a book titled “His Brother’s Keeper” by Jonathan Weiner.  It’s the true story of one man’s race against time to try and find a cure for his brother, who was stricken with ALS at the age of 29.  The book is subtitled, “One Family’s Journey to the Edge of Medicine”.  Indeed, this is where we must travel if we’re going to solve the neurological puzzles of paralysis from spinal cord injury.

As a writer, Weiner has an amazing ability to explain the complexities of neuroscience in terms that can be readily understood by a lay reader.  He also does a terrific job of portraying the impatience and urgency that patients and family members feel when confronted with the glacial pace of advancing therapies from bench to bedside.  The story repeatedly raises the philosophical question of how best to advance science, and towards the end quotes Art Caplan, a bioethicist at the University of Pennsylvania:

“Should the pace of medical research be determined by people desperately afflicted and their kin?  Is that the best way to move the science?  My argument would be no.  Just as it’s hard to do the best science when you’re heavily invested and have a financial interest in what’s going on, it’s very hard to interpret results when your vision is completely clouded up by love of your subject.”

Caplan’s point is well taken.  In our own SCI community we have seen many patients spend tens of thousands of dollars on unproven therapies that provide little or no benefit.  At times advocates have allowed passion to drive their research investments rather than reason.

On the other hand, to my knowledge Caplan is not living with a debilitating or life-threatening condition.  It’s frustrating and tiresome to sit in your wheelchair and listen to scientists, funders, and regulators counsel patience.  And of course we have the problem of our big-name charities losing sight of their initial purpose (see my previous post, “Chase the Vision, Not the Money”).

It’s time for the stakeholders in the SCI cure effort to keep watch over each other:

• For researchers to share their scientific results openly and honestly;
• For advocates to educate themselves about the science of regenerative medicine;
• For charities and patient advocacy organizations to operate with transparency and purpose;
• For regulators to consider the voice of the patient when evaluating risk and reward;
• For those living with SCI to speak up and put a face on spinal cord injury.

Kudos to Dr. Keith Tansey for writing so eloquently on this subject here.  I met Dr. Tansey at Working 2 Walk in 2011, and I know that he is a compassionate professional who understands the frustrations of those living with SCI.  He, too, believes that the science will advance more quickly and safely if we as a community work together, with ongoing, open dialogue and a sense that we are “Our Brother’s Keeper”.