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AZ Symposium: Scientists Meet Their Shareholders

Town Hall: l to r, NY radio host Leonard Lopate; Pete and Deborah Flynn; Marilyn and Bob Hamilton; Lisa Hemmerle and Steve Williams, M.D.
Town Hall: l to r, NY radio host Leonard Lopate; Pete and Deborah Flynn; Marilyn and Bob Hamilton; Lisa Hemmerle and Steve Williams, M.D.

The Reeve Foundation hosted its fourth Spinal Cord Symposium, From Bench to Bedside, in December in Phoenix, AZ. The gathering, from Friday evening until midday Sunday, offered a broad showcase of the work funded by the Foundation. The symposium assembled 120 scientists across many disciplines who are supported by Reeve funds. Scientists go to lots of meetings, but what makes this one unique is that the researchers are not only talking and sharing ideas among themselves but with what might be called their shareholders: people affected by paralysis who are counting on them to find treatments and therapies. Some 60 or so members of the SCI community were included in the weekend’s activities - bringing real-world relevance and a sharper sense of urgency to the work of the researchers.

More Progress in Research

From the non-scientist's perspective, the Symposium offered an unfiltered and even intimate look into the process of discovery, and a deeper appreciation of the complexity of spinal cord biology and the intricate sorts of problems researchers are consumed by. This gathering was remarkable on another level: for the first time, scientists and clinicians from all four Reeve research programs participated. The first three symposia (Chicago, Boston and Atlanta) focused on science from Individual Research Grant awards; the Phoenix meeting also included senior scientists and members of the Reeve International Research Consortium as well as leaders of two other Reeve initiatives, the North American Clinical Trials Network and the NeuroRecovery Network. The Symposium was also attended by six members of the Reeve Foundation Board of Directors.

Dr. Albert Aguayo of McGill University opened the meeting on Friday evening with the keynote lecture, "A Look Back at Regeneration." Aguayo, who is on an advisory panel that oversees the Reeve Consortium, paid homage in his talk to the scientific lineage that informed and shaped his own work. Aguayo made particular reference to Spanish neuroscientist Santiago Ramón y Cajal, whose theories in the late 1890s paved the way for much of what is understood today about lack of recovery after SCI.

At the reception following his talk, Aguayo, in his grandfatherly manner, chatted with old friends and sat with new ones, continuing his tutorial on the history of spinal cord science. Meanwhile, scientists caught up with colleagues and engaged the members of the community in the basics of neurobiology. The community, in turn, engaged the scientists in the basics of living with paralysis.

Community shareholders, l to r: Michael Glen; Alan Brown, Peter Wilderotter, Ruben Rios, Scott Chesney
Community shareholders, l to r: Michael Glen; Alan Brown, Peter Wilderotter, Ruben Rios, Scott Chesney

Saturday was a full day of science. The morning's sessions included a very fundamental look at successful axon regeneration from the perspective of the lowly (but quite instructive) c elegans worm, as well as a look at regeneration of axons that control breathing, and at regulation of axon growth by growth cone manipulation.

Later Saturday morning, Leonard Lopate, host of WNYC's "The Leonard Lopate Show" hosted a Town Hall meeting, considered by many attendees as the highlight of the weekend. This forum addressed the issues of families and caregivers, the unsung participants in a loved one's spinal cord injury story. Prompted by Lopate's easy manner and insightful questions, a mother and son, husband and wife and patient and doctor described a world that is challenging, exhausting and frustrating but one that is also filled with love, selfless sacrifice, good humor and grace.

Included on the panel were Deborah Flynn and her son Pete, who is a quadriplegic; Bob Hamilton and his wife Marilyn, who is a paraplegic; and Dr. Steve Williams and his patient Lisa Hemmerle, who is also paraplegic.

The Town Hall is for some a watershed event; research scientists are surprised to meet people in the SCI world who rate walking with a lower priority than dealing with bowel and bladder, sexual function and chronic pain.

Beyond medical issues, the discussion included the many expenses of disability – both financial and emotional – as well as shrinking access to health care and equipment, and more and more issues with insurance benefits and reimbursement. Lisa described moving to Massachusetts for better health care coverage; her doctor, Steve Williams, explained how his hospital, Boston Medical Center, struggles to deliver proper care but loses money delivering services that don't get reimbursed. Marilyn Hamilton urged the scientists to "hurry it up. The work you do is mind- baffling but we are grateful for it. But I'm getting older now." She also urged the community to step up its advocacy efforts, to educate and inform the public, policymakers and the health care community.

Saturday afternoon included concurrent chalk talk breakout sessions, which are not large formal "show and tell" scientific presentations but rather smaller, more intimate opportunities for investigators to present their data on a specific topic and then engage with their audiences in lively discussion. Topics included stem cells and SCI, "waking up the sleeping spinal cord," improving respiration and dealing with the inhibitory extracellular matrix in recovery.

On Saturday evening, Dr. V. Reggie Edgerton (UCLA) gave a lecture entitled, "It's Time to Pick the Fruit." He was introduced by Arnie Snider, vice chair of the Reeve Foundation Board of Directors, whose brief remarks set forth the challenges for a scientific movement making the transition from research to clinical application. Snider, schooled in the ways of Wall Street and private enterprise, noted that the SCI research field has reached an unprecedented level of maturity as clinical trials are coming to fruition. The field is no longer focused solely on discovery but on drug development. It's expensive and can't be done by academic or philanthropic institutions alone. "We're really in a new era," Snider said. "We are going to have to think the way industry thinks."

Snider described Edgerton as "one of the jewels in our crown." To be sure, Edgerton has helped shape Reeve Foundation science for many years. He has reviewed grants as a member of the Science Advisory Committee; his lab at UCLA is one of six Reeve Consortium labs; and he co-founded the NeuroRecovery Network, the Reeve program to utilize activity-based therapies for functional gains and numerous other health benefits.

V. Reggie Edgerton, Ph.D
V. Reggie Edgerton, Ph.D

Edgerton's talk wasn't so much about the immediate harvest of all the promising therapies for SCI – he listed a few but they are all very much in the pre-clinical stage -- as much as it was an overview of his own work. Indeed, Edgerton and an international group of colleagues are getting closer to translating some of their basic science findings to the clinic. Their fruit is tantalizingly within reach. "After 35 years I’ve seen the picture begin to emerge. In the last five years it's emerging quicker than ever. We're learning so much; the pieces are beginning to fit together."

Edgerton explained to the Phoenix audience that the spinal cord itself is smart and that the sensory system, not the brain, can actually control complex activity and stepping: "There is a lot of automaticity in the spinal cord. We don't have to think about movements, the cord knows what to do. After injury," he said, "we just have to remind it."

In September 2009, Edgerton's group published a major paper showing that rats with no brain input could walk on a treadmill almost normally after training in combination with a drug (Quipazine) and epidural electrical stimulation. He described how he and his group have already begun a human study to test epidural stimulation and aggressive rehab. Edgerton was clearly excited about this. He couldn't get into detail but was obviously very encouraged by the response of the first human subject. Activating spinal circuits without any connection from above the lesion - that’s the fruit. "Let's assume someone figures out how to get a little supraspinal input of axons across the lesion," Edgerton said. "Now when that happens, and that taps into the spinal cord circuitry, the results can be quite big." Later in the day, Robert Grossman, M.D., a neurosurgeon at The Methodist Hospital in Houston, and a member of the Foundation’s Consortium Advisory Panel, described the process of bringing therapies to clinical trial. He knows first- hand the painstaking rigors of setting up a clinical network, having engineered the Reeve Foundation's North American Clinical Trials Network. NACTN’s first trial has enrolled a number of patients to test Riluzole, a drug with promise for acute SCI.

Sunday morning there were more chalk talks zeroing in on the glial scar, hand function, spinal cord circuitry and brain stimulation. The science program of the Symposium was rounded out on Sunday with a session called "Restoration of Health and Function for Chronic Spinal Cord Injury." This featured Susan Harkema, Ph.D., co-founder of the NeuroRecovery Network and scientist at the University of Louisville, and Hunter Peckham, Ph.D., from Case Western Reserve in Cleveland. Harkema described results from several years’ worth of treadmill training studies.

Harkema said 350 patients have participated in the NRN program, with nine in ten showing improvement in health outcomes. Peckham, a pioneer in functional electrical stimulation and neurotechnology, described a new, modular implanted system his team is testing. It will affect upper and lower extremities, especially hand function. He envisions future therapies as a combination of biology and technology.

Peter Wilderotter, President and CEO of the Reeve Foundation, summed up the weekend in Phoenix: "This was an extraordinary event, one of sharing, learning and community-building. It offered a snapshot of scientific progress in the field and a view of a not-too-distant future as new therapies come to the clinic."

-- Sam Maddox

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Continue Christopher Reeve's LegacyPhoto by Timothy Greenfield-Sanders