Finding a cure for Amyotrophic Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) also known as Motor Neurone Disease (MND), can strike without warning and progress rapidly, devastating those in its path. The disease is incredibly complex, and scientists have long struggled to understand its origins and progression.

Molecular biologist Professor Justin Yerbury has dedicated his life to solving the puzzle. He and his team at the Illawarra Health and Medical Research Institute (IHMRI) based at the University of Wollongong, Australia, continue to lead crucial breakthroughs in understanding how ALS is triggered at a molecular level – a fundamental step towards an elusive cure, assisted by funds raised through UOW’s inaugural fundraising appeal for this disease in 2018.

“One of the biggest hurdles in finding a treatment and a cure for ALS is effectively delivering drugs to the affected neurons in the brain,” Professor Yerbury explains.

“We have discovered a way to increase the chances of gene therapy treatments working by crossing the blood-brain barrier. We have also identified and tested a wide range of potential new drugs and gene therapies. None of this would have been possible without generous and ongoing donations to our research.”

Many will be familiar with Professor Yerbury’s story – both his resolute determination to wipe out ALS and his personal battle with the debilitating condition that has claimed so much of his family. Though long celebrated in international research circles for his work, it was with the March 2018 airing of the first of two ABC Australian Story documentaries on his life that his battle became public, triggering a groundswell of awareness and support.

Eleven-year-old April Barker was among them. Moved by Professor Yerbury’s story, she held a yard sale in August for potted plants rescued from a neighbouring home, raising more than $1,000 to support his ALS research.

And she’s not alone; his passion and unshakable commitment to finding a cure for ALS has catalysed so many to join the cause. Earlier in the year, The Biggest Loser’s Commando Steve donated his time to put 200 people through their paces at a special fitness boot camp. His celebrity status helped ensure the event was a sell-out, raising $6,000 and helping last year’s fundraising appeal surpass initial targets to achieve close to $38,000.

This collective power of good has also generated a host of community-led donations, from $16,455 through a Victorian Ladies Back on Your Bike Challenge to $10,000 in contributions made by guests of Intelligent Polymer Research Institute Director, Professor Gordon Wallace, in honour of his birthday. Professor Yerbury’s highly-anticipated UOW Knowledge Series Lecture in May spurred further support, while a recent trivia night raised an additional $17,000.

“Every donation counts. We would not be able to do the work that we do without this community support; it’s just as important as an extra person in the lab,” Professor Yerbury says.

“Without philanthropic support we would have to forgo certain experiments and tools, which would limit our scope and impact. Essentially, our research would grind to a halt.”

And it’s not just philanthropic contributions Professor Yerbury’s mission has inspired. On hearing of his decision to undergo life-prolonging surgery so he could continue his work, his long-time friend Christen Chisholm was compelled to transition to a research career after 20 years in teaching. She is now a PhD candidate in his research group at IHMRI, under a scholarship endowed by Professor Yerbury’s own family.

“I knew straight away that I wanted to be a part of his fight, and to do everything in my power to help,” Chisholm recalls.

“Being part of this extraordinary group of people searching for greater understanding and hopefully a treatment for ALS is incredibly exciting and rewarding.”

With the 2019 ALS Appeal chasing a target of $20,000, Professor Yerbury is energised by the possibilities this next wave of support could bring to life. He refuses to rest until he’s wiped ALS off the face of the planet.

“Within the next few years we will be ready to move to preclinical testing, but we can’t do that without vital funding to continue this exciting research,” he explains.

“It costs roughly $1,000 to screen a single drug in our cell line, and $10,000 to train one researcher to perform faster, more accurate experiments using UOW’s high-powered Titan microscope. Every single contribution can enable a vital part of the process and take us closer to our ultimate goal.

“I have absolutely no doubt that, within my lifetime, we will find a cure for ALS.”