Posts Tagged ‘advocacy’

Back to the Future

November 24, 2014

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.

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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.

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.

Why Are We Still Paralyzed?

April 11, 2012

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?”


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