Who we are

Introducing StepAhead Australia

Diving accidents make the headlines but we rarely hear about the aftermath of a spinal cord injury. Imagine a youngster facing life in a wheelchair – perhaps losing control not only of his legs, but also bladder, bowel and sexual function. About eight new cases occur each week, mostly involving teenage boys.

“Oh to be a rat”

Medicine offers little for people with spinal cord injuries. Yet laboratories are rife with experimental therapies. As the late Christopher Reeve once said, “Oh to be a rat”. Reeves played Superman in the blockbuster movie series. A fall from his horse left him paralysed from the neck down. But it was as a quadriplegic that he displayed truly superhuman strength: he used his celebrity muscle to push researchers and funding agencies to get therapies out of the lab and into the clinics.

George and Barbara Owen, the Founders of StepAhead Australia are key to our success and are cut from the same cloth as Christopher Reeve. Their force derives from parental devotion and from the combination of their professional skills. George and Barbara’s son Sam became a quadriplegic after a diving accident at home. George is an orthopaedic surgeon and Barbara, a former nurse. Barbara is a force to be reckoned with. Besides driving StepAhead and attending to Sam’s needs, she runs an organic cattle farm. George and Barbara Owen found out what a difficult task it is getting the medical establishment to think of spinal cord injury as a curable disease. It seemed like a suggestion from another planet. When George and Barbara founded the organisation in 1998 as the ‘Spinal Cord Society of Australia’ their focus was to establish local research laboratories here in Australia. In 2008 with progress and maturation of the organisation our focus has been redefined to translating international research into therapies as ‘StepAhead Australia’.

Spinal cord injury research over the last five years has added a fresh new hope. Indeed we’re bombarded by reports of stunning new discoveries. But for patients with spinal cord injury, the pace at which these discoveries are being translated into cures is agonizingly slow. The desperate hock their houses to travel to India and other places and gamble on unsubstantiated treatments. But why aren’t more rigorous trials being conducted in Australia or America?

Valley of Death

It’s been called the “valley of death” – the chasm that exists between basic discoveries and the rigorous applied research needed to bring them to the clinic. Academic researchers are funded to do basic discovery. Drug companies focus on bringing lucrative treatments to the clinic. But there are few resources for building the pipeline to bring treatments for spinal cord injury out of the lab to patients. Drug companies don’t see it as a commercial proposition or it’s just in the “too hard basket”.

Patients’ groups have sprung-up to fill that void. Not only do they raise funds, but they are creating a new culture amongst academic scientists. Traditionally scientists are competitive and their focus rarely extends beyond their lab rats. Through the glue of financing, patients’ groups are triggering collaborations between researchers and extending their attention span to the needs of patients.

Over the last five years, StepAhead has successfully raised funds in Australia and forged a network that includes some of the world’s leading spinal cord researchers and clinicians. It is recognised by the Federal Government as the peak body responsible for coordinating research into chronic spinal cord injury. These researchers include Stephen Livesey and Kathy Traianedes of St. Vincent’s Hospital, Melbourne, Giles Plant at the University of Western Australia, Stephen Davies at the University of Colorado, Brent Reynolds at the University of Florida, John McDonald at Kennedy Krieger Institute at Johns Hopkins, John Steeves, founding Director of ICORD (International Collaboration On Repair Discoveries) at the University of British Columbia and Jessie Owens, a spinally-injured Alaskan scientist who keeps StepAhead abreast of the latest findings in the field.

Each year StepAhead “research fellows” get together for a conference attended by patients and other members of StepAhead. It is an exhilarating testament to what the Owens are working towards: connecting leading researchers to patients and their families.

So far, the projects have been modest. Now the time has come to ramp up, says Brent Reynolds, the scientific program director for StepAhead, who is also director of the Adult Stem Cell Engineering and Therapeutic Core of the McKnight Brain Institute at the University of Florida. Part of the progress made in the last few years is zeroing in on the best type of cells to use in spinal cord repair. Some of the most promising results are coming from stem cells that are programmed to become spinal cord cells – so-called neural stem cells. These cells are present in the adult brain and once isolated, can be multiplied in the culture dish ad libitum. Reynolds’ colleague, Angelo Vescovi, co-director of the Stem Cell Research Institute in Milan, has established a facility for growing large numbers of cells suitable for clinical applications. Stephen Davies has recently reported enormous success using these types of cells together with a protein that breaks down scar tissue known as Decorin. Stephen Livesey and Kathy Traianedes have developed a technique in which tissue can be processed to remove cells. This acellular scaffold can potentially bridge the gap and provide a pathway in spinal cord injury.

Now Reynolds wants to try these cells in a rat model that mimics the type of long-standing spinal cord injury that 20,000 Australians live with. The results will inform clinical trials to be carried out in Australia. Due to reduced costs and less red tape it will be easier to carry out trials in Australia compared to America, says Reynolds.

StepAhead’s target is to raise $5 million from the general and business community to fund the development of these trials.

Many of our grandparents still recall the days when diabetes was an untreatable disease.

“Children dying from diabetic keto-acidosis were kept in large wards, often with 50 or more patients in a ward, mostly comatose. Grieving family members were often in attendance, awaiting the (until then, inevitable) death. In one of medicine’s more dramatic moments Frederick Banting, Charles Best and James Collip went from bed to bed, injecting an entire ward with the new purified extract. Before they had reached the last dying child, the first few were awakening from their coma, to the joyous exclamations of their families.” The extract the scientists were injecting was insulin. Its discovery eventually won the scientists a Nobel Prize. But it took three decades and dogged scientists who kept pursuing their goal despite lots of false starts.

Today we need dogged researchers who will prove the value of new therapies in spinal cord injury. Thanks to their efforts today, our grandchildren will look back and be aghast that there was once a time when a spinally-injured person was told that medicine had nothing to offer them.

Here’s where you come in.

We need your help
to speed things along.

We need your support to continue to connect the world’s leading researchers and clinicians with spinal cord patients and their families to remove the barriers and find a solution today and not tomorrow.