Posts Tagged ‘patient 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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Uniting and Fighting

October 27, 2014

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.

Marilyn Smith, Peter Wilderotter, and Kate Willette announce the launch of Kate’s new book.

The Rick Hansen Institute sends a team to the Symposium.

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.

Ida Cahill talks with advocates after announcing Conquer Paralysis Now’s SCI Challenge.

Our absolutely amazing emcee, Barry Long from Pushing Boundaries.

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.

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.

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.

Speaking Truth to Power

May 7, 2012

If we’re ever going to gain traction as Cure Warriors, we’ve got to speak out to the various individual and organizational leaders in the spinal cord injury community.  Thanks to the persistent efforts of Dennis Tesolat (also known as Mr. “Stem Cells & Atom Bombs”), there is a respectful yet pointed appeal to the Rick Hansen Foundation (RHF) that as of today boasts over 700 signatures from around the world.

The Foundation has long proclaimed its vision to be “a world without paralysis after spinal cord injury”.  That’s our goal, too, so several months ago Dennis and a few of his friends sent RHF’s CEO a simple request:

  • “Please outline your spending on translational research for central nervous system regeneration, i.e. a cure for spinal cord injury.”

The response failed to outline any specifics other than what’s available in their annual report, i.e. – “81% goes to charitable programs.”  Dennis wasn’t satisfied, so he decided to get organized and continue to ask questions.  He asked for more details on RHF’s spending, and for Rick to publicly answer the questions at next week’s Interdependence Conference of SCI leaders.

I imagine most of my readers have already signed the appeal, but if not, there is still time if you do it today.  It’s an easy, one-click process from the Stem Cells & Atom Bombs website.  Follow this link.

The Rick Hansen Foundation earns annual revenues in excess of $20 million, 71% of which comes from Canadian national and provincial government funds.  This is an extraordinary amount of money, and with these types of resources the Foundation should respond to the wishes of the SCI community.

We respect the work that RHF has done to improve accessibility and quality of life for people living with SCI.  At this point in time, however, with so much promising regenerative research on the cusp of translation, it’s time for the Foundation to turn its attention and its resources to the achievement of a cure.  As survivors of spinal cord injury and family members, we have the right, and even moreso the responsibility, to speak up to those in power at the Rick Hansen Foundation.


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