Posts Tagged ‘advocacy’

Keeping an Open Mind

July 8, 2011

At this stage of the game in searching for curative therapies, it’s essential that advocates keep an open mind about the possibilities.  We are just BEGINNING to see laboratory science move into human clinical trials, and to date we have not seen demonstrative proof of any therapy that is actually repairing the spinal cord.  Chris Powell, another warrior in our ever-growing network of moms advocating for a cure, put it best:

“I’m a hard core SCI advocate in the purest form.  I have no preference on which type of cell, growth factor, inhibitor or country to discover. I have no pre-concieved notion about the ultimate SCI cure.  I consider it all nothing more than a calculated dog and pony show until something is actually proven safe and restoring function.  I am willing to listen and learn about the science and others ideas. I am willing to advocate for a sci cure by helping in any way possible to get the therapies to clinical trial so we can find the very best and not waste time or money on anything that’s going downhill.  I remain open minded and interested.”

As Cure Warriors, our immediate goals are:

  • Learn, learn and learn some more about the science – Working 2 Walk is a fantastic, affordable opportunity to educate yourself;
  • Follow the progress of clinical trials and push for more.  This is where the rubber meets the road, and we’ve got to speed up the pace of clinical trials if we’re ever going to find out what works and what doesn’t.  U2FP’s Clinical Trial Table is an excellent resource to get you started;
  • Armed with knowledge, get vocal.  Talk to your communities and the media.  Question the scientists, the funders, and the regulators.  Support the best science and the strategies that will accelerate the achievement of a cure.

Skin in the Game

June 16, 2011

One of my favorite fellow advocates, who is quadriplegic, often uses the term “skin in the game” to describe his commitment to achieving cures for spinal cord injury. No less a renowned figure than Warren Buffet coined the phrase, referring to a situation in which high-ranking insiders use their own money to buy stock in the company they are running.  The idea behind creating this situation is to ensure that corporations are managed by like-minded individuals who share a stake in the company (Investopedia).

When it comes to making policy and delegating research funds, the individuals who have the most “skin in the game”  are those directly impacted by a disease or condition.  Unfortunately, too often they are not part of the conversations that lead to decision-making.  At U2FP this issue is rising up our priority list as we watch the regulatory environment strangle medical innovation.

History does provide us with at least one outstanding example where patient advocacy led to expedited treatments – the AIDS community’s response to the 1980s epidemic and their subsequent scientific and political involvement.  Currently, the California Institute of Regenerative Medicine (CIRM) has a governing board with representation from science, industry and patients.  One of the board’s members, Duane Roth, has written a convincing argument for the participation of patient advocates in his essay, “A Third Seat at the Table”.

One of our outstanding SCI community advocates and bloggers, Don Reed, also sits on the CIRM oversight board.  In case you haven’t heard, CIRM recently awarded $25 million to Geron Corporation to support clinical development of GRNOPC1, the cell therapy being used in Geron’s Phase I clinical trial for spinal cord injury.  For a fascinating report on the behind-the-scenes negotiations that led to the decision, read Don’s blog entry, “California Versus the Valley of Death”.  The story is a testament to the power of patient advocacy.

It’s a Marathon, not a Sprint

May 13, 2011

First of all, thanks to everyone who supported the effort to get AB 190 passed in California.  I’m happy to report that the committee voted 4-2 in favor of the bill; for a comprehensive analysis of the proceedings (and an insight to advocacy in action) see Don Reed’s blog here.

When Unite 2 Fight Paralysis defined its mission to educate and advocate for curative therapies, we heard the quote from many quarters, “It’s a marathon, not a sprint.”  This warning is unlikely to daunt anyone who lives with a spinal cord injury.  As we know, not only do you lose physical abilities with SCI, you also lose TIME.  Just getting up and out the door in the morning is a marathon.

Our first couple years felt like the first couple miles of a marathon.  If you’ve ever done one, when you start out the finish line seems a long ways away.  Back in 2006 and 2007, the research reports we were hearing at Working 2 Walk were mostly about basic science and the lack of any real promising therapies in the lab for spinal cord injury.  Attendees from the SCI community felt discouraged.

Team U2FP at the 2010 Finish Line - Click on the picture to support our 2011 Team

Gradually, though, the reports became more promising.  The world of stem cell research took off.  Scientists began solving some of the neurological puzzles on a molecular level, and translating their findings to potential therapies.  Science is moving out of the lab and into clinical trials.  We’ve got a couple miles under our belt now and are picking up momentum.

Just like the U2FP team that is walking in the Seattle half-marathon, we’ll go faster and have more fun if we advocate TOGETHER.  Research scientists, investors, practitioners, and community advocates must investigate, question each other, strategize, collaborate, and most importantly unite in order to reach the ultimate finish line – a cure for paralysis.

Learning From Others

February 28, 2011

I have been on the road for the last couple of weeks.  My first stop was Washington, DC, where I attended the One Voice Advocacy Conference hosted by Parent Project Muscular Dystrophy (PPMD).  PPMD was founded 15 years ago by Pat Furlong, whose 2 sons had been diagnosed with Duchenne Muscular Dystrophy.  While she eventually lost her sons to the disease, Pat continued to build PPMD into the powerful advocacy organization that it is today.

PPMD serves as an admirable model for the spinal cord injury community to follow.  Duchenne is a rare disease that strikes boys almost exclusively, with diagnosis at age 3-5 and average survival of 10-15 years.  It is an exhausting and heartbreaking experience for families to endure, yet in the midst of this journey parents are finding the time and energy to advocate for their sons.

The conference opened with testimony from Duchenne family members.  Representatives from the NIH, FDA, and CDC were in the room to listen, offering an extraordinary opportunity for the advocate community to share a perspective “from the trenches”.  The families did an amazing job of communicating their concerns, their daily life experiences, and their sense of urgency to find therapies that will prolong and improve the lives of Duchenne patients.

Parents spoke with a passion borne from experience; at the same time they demonstrated an impressive level of knowledge about the disease, the progress of research, and the clinical trial process.  Clearly they had spent a lot of time educating themselves, and as a result spoke from a position of strength to the policy makers in the room.  They asked and answered questions with equal aplomb, and I came away with a couple of lasting impressions to inform the work of U2FP:

  1. Advocacy by community members can make a HUGE difference in the progress of research, but it must be targeted and well-informed to be effective.
  2. We must add the community voice when decisions are being made about where to allocate research funds, be they public or private.

For more information on PPMD’s programs and how they are making a difference, please visit their website.  I’ll write more about my travels in the next blog post.

It’s a Thin Line

February 6, 2011

between explaining the facts about daily life with a spinal cord injury, and evoking self-pity.  Word choice, attitude, and presentation can make all the difference.

As advocates for a cure, we want to speak from a position of strength.  This means we arm ourselves not only with knowledge but with an understanding of the power of specific words.  Let me cite a couple of examples.

If you have a spinal cord injury or are a family member, do you see yourself as a “victim” or as a “survivor”?  At U2FP we made a mistake early on by saying that we represented “victims”; we were gently corrected by several observers who pointed out that “survivors” has a much more positive connotation.  A quick dictionary check shows that “survivor” means “somebody with great powers of endurance” or “somebody who overcomes a traumatic experience”.  A “victim”, on the other hand, is defined as a “helpless person”.  The word associations speak volumes.

Another more subtle but equally important distinction comes when we use the words “handicapped” or “disabled” instead of “accessible”.  These terms are used to describe everything from a parking spot to a hotel room to event seating.   Think about it.  The words “handicapped” and “disabled” put a label (with negative implications) on the user, whereas “accessible” characterizes the service provided by a vendor, who assumes the burden of responsibility.

When you call to book hotel accommodations, you can ask for either a “handicapped” (my problem), or “accessible” (your problem) room.  Personally I would like to see the term “handicapped” eliminated from our community’s vocabulary.  The word diminishes us.

In my previous post I talked about keeping an “Elevator Speech” in your hip pocket as an advocacy tool.  Equally important is your own personal cultivation of language that speaks positively and forcefully about your situation.

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