Archive for the ‘spinal cord injury’ Category

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.

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Giving Thanks

November 20, 2012

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.

The Big Picture

August 30, 2012

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

July 12, 2012

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.

Shoulders to the Wheel

June 7, 2012

Prior to the invention of the automobile, people moved from place to place in carts, carriages & wagons.  If the  vehicle became stuck in the mud, it was common for the passengers to get out and work collectively to push it out, literally putting their “shoulders to the wheel”.

The image is a very apt metaphor for the challenges we face in the cure movement.  I believe we are now “unstuck” from the notion that axons cannot regenerate and there is no hope for curing paralysis. We still have a lot of “pushing” to do, however, to get our wagon all the way up the hill.

Putting your shoulder to the wheel means to put full effort into the task until it is completed, to work persistently and wholeheartedly. That’s what it will take to reach our goal, and the more shoulders we have, the faster we’ll get there.

Over the last few months, we’ve seen a couple living examples in the SCI community of advocates demonstrating this kind of effort. Out in California, Don and Roman Reed have been unwavering in their determination to renew funding for the Roman Reed Spinal Cord Injury Research Act. This little bill has provided millions of dollars of support for the the Reeve-Irvine Research Center, but was a victim of budgetary cuts during the recession.

Undeterred, Don & Roman set forth to create an alternate funding source through an add-on to traffic tickets.  After several months of lobbying and negotiating, and aided by community e-mail campaigns, they are close to achieving their goal. You can learn how they did it and help them get to the finish line by following Don Reed’s blog here.

Another one of our powerful shoulders belongs to Dennis Tesolat. Talk about persistent! Several months ago, Dennis and a few of his friends asked The Rick Hansen Foundation a very simple question, “How much are you spending on a cure?”  I wrote about his efforts to solicit a satisfactory answer in last month’s blog entry, and regret to report that RHF did NOT offer any kind of response at the recent Interdependence conference.

That won’t discourage Dennis. Rather it will empower him to seek more community support, to reach out to the media and other organizations affiliated with RHF, and to continue his dogged persistence until we have an answer as to how the Foundation is working to achieve “a world without paralysis after spinal cord injury” (the RHF mission).

Don, Roman and Dennis don’t get a lot of media coverage for their work. They’re not flashy or self-promoting.  They don’t whine about life with SCI, or complain about the frustrations inherent in the glacial pace of our political and regulatory systems. They just put in the work from day to day, putting their shoulders to the wheel, staying true to the course, and keeping their eyes on the prize.


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