Posts Tagged ‘cure’

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?”

Advertisements

Chase the Vision, Not the Money

February 3, 2012

I had no sooner finished posting this blog entry than the Komen Foundation announced that they were reversing their decision on funding Planned Parenthood.  No matter – the damage has been done and there are still lessons to be learned.  Read on.

This week the Susan G. Komen Foundation announced that they would no longer provide funding to Planned Parenthood for breast cancer screenings.  The decision sparked a huge firestorm of outrage as well as some serious investigative journalism into the reasons behind the defunding.  It’s a revealing story that illustrates the perils of prosperity and offers important lessons for charities and donors alike.

Komen is practically a household name, and its ubiquitous branding with pink ribbons, pink shoes, pink gloves, etc., is the envy of patient advocate organizations worldwide.  Like many advocacy groups, it started with a personal connection to a particular disease/condition.  When her older sister Susan died of breast cancer in 1980, Nancy Brinker Goodman founded SGK in her honor. 30 years later, Komen has annual earnings of nearly $400 million.

Komen has unquestionably raised awareness about breast cancer and pumped millions into research and public health education. And yet, in terms of finding a cure there really isn’t much to show for the effort.  Komen’s own website reports that the incidence of breast cancer has actually risen slightly over the last 30 years. During the same timeline, the mortality rate (time of diagnosis to time of death) has decreased somewhat for white women, but shows a slight increase for black women.

In their highly sophisticated marketing campaigns, they brand themselves as “Susan G. Komen for the Cure”, raising money via the “Race for the Cure”.  Unfortunately, rather than chase that vision they’ve fallen prey to the allure of money and the corruption of politics. Komen has built the kind of empire that is seen all too often in the “charitable foundation” arena; a marketing machine whose lavish salaries and political agenda drive its decision-making.

When you’re trying to keep a nonprofit viable it’s easy to lose sight of what got you started in the first place.  Everyone needs money to maintain and expand valuable programs.  But when your priorities shift from chasing the vision to chasing the money, the people and purpose you are supposed to be serving can get lost along the way.

We don’t know where Komen is headed from here, but nonprofit leaders would do well to take a lesson from this enormous blunder and the story behind it. Donors would be well-advised to take a hard look at the charities they choose to support, and do the research to find out where their money is actually going.  In the words of The Guardian’s Lizz Winstead,

“Last I checked, a pink breast cancer awareness toaster isn’t a substitute for affordable chemotherapy.”

Home for the Holidays

December 28, 2011

On December 1, 2002, my son suffered a C6/7 spinal cord injury when a wheel came off an oncoming truck and landed on top of his pickup.  9 years later, having graduated from law school and secured a full-time job, he came home to celebrate the holidays with his family.  Together we reflected on the remarkable journey he had taken to work his way back to physical, emotional, and financial independence.

If there is such a thing as being lucky in the wake of a spinal cord injury, it applies to my son.  Had his neck broken just a few millimeters higher, he would not have the use of his hands or arms.  He used every ounce of his energy and determination to achieve his goal of independence, but still could not have made it without the extraordinary support of his family, friends, community, and numerous strangers.  Such good fortune does not fall to many who are stricken with SCI.

While we celebrate and take pride in his accomplishments, we know that he represents the minority of those living with SCI.  According to the National SCI Statistical Center, at 20 years post-injury, only 35% of persons with a spinal cord injury are employed.  This statistic is not just a function of injury level; the employment rate for people with paraplegia is only slightly higher than for those with tetraplegia.  There are numerous social, psychological, and economic barriers that conspire to keep persons with SCI out of the work force.

The unemployment rate is but one of many “invisible” secondary complications of spinal cord injury.  While the media is full of “inspiring” stories about people living with SCI, much less is said about what goes on behind the scenes.  No one wants to start a pity party, but if we’re going to achieve “cure consciousness”, we need to speak the truth about:

  • the loss of bowel, bladder & sexual function;
  • psychological trauma & suicide;
  • loss of time, productivity, and often independence;
  • a host of other issues that accompany spinal cord injury.

For every heartwarming story in the media, there are hundreds more untold about people and the daily realities of SCI that no one ever sees.  The public is often led to believe that one can achieve recovery through hard work and determination alone; if this were true, the majority of survivors would be up and walking around.

I am extremely proud of what my son has accomplished since his injury, and at the same time appreciate that it was made possible by some good fortune and a remarkable support system that augmented his efforts.  I also know that he would readily embrace the opportunity for regenerative therapies that could give him back a healthy body.

Enough With the Rats!

October 30, 2011

Working 2 Walk in Rockville was such a rich experience, I’ve had trouble deciding what to write about first.  For today, let’s look at the message of our international advocates, all of whom traveled great distances to meet the scientists at W2W and express an urgency to make the leap from working on the spinal cords of lab rats to those of humans.

Martin Codyre (Ireland), Harvey Sihota (United Kingdom), and Dennis Tesolat (via Skype from Japan) spoke frankly about what it’s like to sit in a chair and observe:

  • Promising therapies such as cethrin and hypothermia that never make it to Phase III trials because of financial and regulatory hurdles;
  • Large SCI organizations that use the word “cure” in their promotional materials, but spend relatively little on restorative research;
  • The lack of research attention paid to chronic injuries, when arguably that population has the greatest need and potentially the greatest return on investment;
  • A perceived lack of collaboration, commitment, and coordination amongst the stakeholders to push a product to market.

Of course it’s our goal at Working 2 Walk to motivate members of the SCI community to move beyond observation and into action, which became the focus of a lively exchange between the panel members and audience.

A few of the more powerful comments:

“I think that what we’re going to do is take up our own part of the job. What is it? If you’re paralyzed and you have a part time job, your full time job is moving this along. If you’re paralyzed and you have a full time job, your part time job is moving this along.”

“A lot of us are speaking about hope, and that’s awesome, but we need to talk about action.  I heard Jerry Silver say ‘I’m fine.’  Well, I’m happy that you are fine, but I am not fine.  I’m not here to criticize, but I want to know how we get well. Let’s start with a goal: we want clinical trials in two years and manage toward it.”

“We could be much further along toward a cure, which I define as getting out of the chair. We can’t be happy just with bowel and bladder, not that we all don’t want that. We have to take what we can in the short term but look toward the long. We need to push for a big change, or we’re all going to die in these chairs.”

Working 2 Walk itself is an effective catalyst for change, bringing together scientists who in the presence of consumers may be more motivated to collaborate, building the knowledge base of advocates, and creating unique networking opportunities.  But more needs to be done on a year-round basis.

Translation of therapies from the laboratory to the clinic is often called “The Valley of Death”.  In a recent Science Daily article about stem cell treatments for spinal cord injuries, Dr. Michael Fehlings noted that “At this time, a strong patient advocacy base would likely help provide momentum to help translate current research into clinical applications.”  Let’s get going.

The Devil is in the Details

September 27, 2011

With less than 3 weeks to go until the Working 2 Walk Science & Advocacy Symposium, my head is spinning with the endless details that need to be addressed.  Making sure everyone is registered properly, compiling and proofreading the event program, keeping the website updated, communicating with our attendees and supporters, talking with the hotel about catering and audio/visual requirements, and the list goes on – connecting all the dots keeps W2W on my mind 24/7.

Everybody should take a turn at event organizing at some point, if just to gain an appreciation of the minutiae that need attention every step of the way.  I’d venture to say there are similarities with trying to get the nervous system re-organized after a spinal cord injury.  Talk about connecting the dots!

Laboratory research has produced a number of theories about the best way to go about restoring function lost to paralysis.  Our current real-time therapies include adaptive equipment, intensive exercise, electrical stimulation (FES), and locomotor training, all of which have shown the ability to enhance recovery.  To date, though, none of these could be considered a cure.

At Working 2 Walk we will hear a variety of theories about the best way to go about achieving curative therapies, including:

  • nerve bridging enhanced by chondroitinase to promote regeneration;
  • the use of biomaterials as part of drug and cell therapy treatments;
  • the role of neuroplasticity in repairing the nervous system;
  • lab results and the first stage of clinical trials using different cell therapies.

Slowly but surely we are assembling the pieces of the puzzle that will one day fit together and provide answers to the complex problem of curing paralysis.  As one scientist said to me a few years ago, “Most people believe that cell therapies will offer solutions for people with SCI; the devil is in the details.”


%d bloggers like this: