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Performance Lighting

In the Spotlight

Susan Howley, A Tireless Advocate for Patients  

In the Spotlight are SMDG's new series of conversations with thought leaders, senior scientists and patients' advocates.

I recently sat down with Ms. Susan Howley, an amazing advocate for patients. Susan has spent over 30 years bringing funding and the latest technologies to patients suffering from spinal cord injury.  Susan was the Executive Vice President for research at the Christopher and Dana Reeve Foundation and understands not only the challenges of finding the most effective and safe therapeutics for neurological diseases but has helped the field greatly through her tireless efforts.  I had met Susan many years ago while I was at Washington University School of Medicine working with my friend, late Dr. John McDonald who at that time was the late actor, Christopher Reeve’s doctor. 

Shadi:  Dear friend Susan, it has been great to catch up with you.  I am so grateful we have a chance to have this conversation.  I remember we met when Chris became one of late John MacDonald’s patients and I used to see all of you at our center in St. Louis. Would you please share how the Christopher and Dana Reeve Foundation came about?

Susan:  The Christopher & Dana Reeve Foundation was successor to the American Paralysis Association (APA), which had been started in the early eighties by families of individuals living with spinal cord injury (SCI).  APA’s mission was to support research to develop treatments and cures for SCI.  After Christopher Reeve was injured in 1995, he was attracted to APA because of its emphasis on scientific collaboration and cross-fertilization.  In 1999, he and Dana founded the Christopher & Dana Reeve Foundation, a merger of APA and their own foundation formed just after Chris’ injury. 

Shadi:  Soon after Chris had his accident and he was told that there was nothing medicine could do for him, he started advocating for spinal cord injury patients and became a real advocate for research on SCI.  What are some of your early thoughts and memories?


Susan:  Long before the equestrian accident that left him paralyzed, Chris was an activist for many political causes and several charitable organizations.  His rigorous training at Cornell and Julliard, combined with his success on the stage and in film, gave him the charisma, presence and staying power to be a passionate advocate.  After his injury, he became a fearless crusader on behalf of the disabled, scientific research and stem cells. 

There was something attention-grabbing about the image of Superman, now completely paralyzed, yet so animated as an advocate.  Chris put a human face on spinal cord injury.  He was instantly recognizable, he was a great communicator and he made it his mission to learn as much about spinal cord research as possible.  Importantly, not only did he educate and motivate those in the SCI community, he educated and impacted neuroscientists as well.  One young investigator told me that Chris changed the way he thought about his research every day when he went into the lab.  The Reeve message was simple:  there are human patients desperate for therapies to ameliorate their diseases and disorders, so science is not just about fascinating theoretical questions and elusive answers.  It has the potential and the power to change lives for the better.

Shadi:  What are some of the impacts that you think the Reeve Foundation has had over the last 20 years on the SCI research?

Susan:  First as APA, and later as Reeve, the Foundation invested heavily in its international Individual Research Grants (IRG) program.  The brain and spinal cord are extraordinarily complex, as is any spinal cord injury and in the 1980s, little was known about how the normal spinal cord, much less the injured cord, worked.  So IRG awards supported basic science in neuroprotection, axon growth and guidance, inhibition and cell transplantation.  Later, as the field grew more sophisticated and those living with SCI found their voices, IRG awards supported rehabilitation research (does activity play a role in recovery and if so, what kind of exercise and when?) and secondary complications of injury (respiration and bowel, bladder and sexual function). 

An APA IRG award was considered a feather in one’s scientific cap.  The review process was rigorous and as is almost always the case, available funding was limited, so the grantmaking was extremely competitive.  Reeve set the bar high for the field. 

The IRG program was designed to entice non-spinal cord investigators into the field.  This approach was quite successful, and it helped enriched the pool of scientists thinking about injury and repair and brought new expertise and tools to the search for SCI therapies.

Shadi:  Where do you think we are in terms of research?

Susan:  I’ve worked in the spinal cord field for more than 35 years.  As I reflect on where we began (the dogma was that


once damaged, the spinal cord cannot be repaired) to today’s realistic optimism, I am hopeful!  Of late, spinal cord research has expanded and players in the field (scientists, the SCI community, NGOs, federal funding agencies) have begun to address questions of translation, moving from the research bench to the clinic.  This is not a trivial matter and there are no easy answers.  How much knowledge is sufficient to move from mouse to man?  How do we determine the “low hanging fruit” that perhaps has the best chance of transitioning from lab to clinic?  Is there a need to understand the relationship between individual therapies and rehabilitation?  How should clinical trials be designed to give us interpretable meaningful data? 

Human clinical trials are incredibly expensive.  SCI leaders will have to grapple with this challenge because the current paradigm of ad hoc studies funded by a hodgepodge of individuals and organizations isn’t sustainable.   Novel avenues must be explored.  For example, can clinical trial design help contain cost?

There is also the question of who will pay for a new treatment?  In the United States this has outsized importance under our healthcare system.  The transition from lab to clinic must include parallel efforts to ensure reimbursement by federal and private insurance companies.  What good is a cure if the patient can’t afford it?

Yes, I am hopeful that sooner rather than later therapies to ameliorate some of the awful dysfunctions of spinal cord injury will be at hand.  In little more than forty years, scientific research has firmly established the remarkable capacity of the brain and spinal cord to reorganize after devastating injury.  Those who live with spinal cord injury have extraordinary unmet medical needs and the research and medical fields are on the cusp of delivering treatments that have been demonstrated to be safe and effective.

Shadi:  What are your thoughts in terms of where you think we should go in terms of investment and research for the future for SCI and other neurological diseases?

Susan:  As a guiding principle, the argument that the research endgame is safe and effective treatments for the patient is compelling.  Whether we are talking about SCI, stroke, TBI or other disorders of the central nervous system, the pain and suffering are real and there are moral, ethical, financial and societal reasons that underpin the search for therapies and cures.

Individuals who live with spinal cord injury want to know that a promising treatment tested in a clinical trial is effective, but safety is also of paramount importance.  Most people I’ve spoken to who live with SCI stress that the one thing they don’t want to risk is a loss of the function they have left – understandably so.  It would be disastrous if a trial participant suffered such a loss due to the intervention being tested.  Disastrous not only for the individual but for efforts to translate research from the lab to the clinic.  Consider what happened to the gene therapy field when a 1999 experimental treatment killed a volunteer participant.  The field was devasted and it took more than a decade for it to regain traction.  Those who are spinal cord injured will likely have near-normal lifespans.  They will be bedeviled by the many dysfunctions that

arise from an injury and the myriad of health challenges they face day in and day out. But they can also be remarkable citizens of their communities, fully engaged and productive in their families and with friends and colleagues.  To that end, scientists and trialists must take seriously the directive to do no harm. 

If we think about research as an iterative process, then it makes sense that we would begin first to translate those interventions we regard as “low hanging” – those that for a host of reasons we think will improve the lives of those with SCI now.  The outcomes may not be optimal but ameliorating symptoms or promoting limited recovery are worthy achievements.  In the process, investigators and clinicians will gather new knowledge and use it to improve upon the early interventions and those still in the pipeline – a true translational process. 

A caveat is that ongoing investment into the basic sciences must continue apace.  Although it’s exciting to contemplate the first new treatments coming into the marketplace, they will have limitations and our goal should be to optimize patient outcomes.  The R&D pipeline has a voracious appetite for new knowledge and that can come only with robust support for the basic sciences. 

By :  Dr. Shadi Farhangrazi


Picture credits: 

Susan Howley's picture: provided by Susan Howley.

Superman picture: picture of Christopher Reeve as Superman, Fair use,

Christopher Reeve's picture: Christopher Reeve Wikipedia page, Fair use,

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