As we approach the end of 2023, I want to acknowledge as a community how far we have come in our quest for a cure.
Most people reading this are deeply familiar with how devastating a spinal cord injury can be, only compounded by being told days, weeks or months later “you will never walk again”.
Once upon a time, that may have been true. Entrenched dogma that once broken a spinal cord could not be fixed meant very little funding was invested into SCI research compared with other disease areas.
Thankfully, a small handful of motivated and visionary people around the globe, like the SpinalCure founders Joanna Knott OAM, Professor Perry Bartlett AO and the recently passed away Stewart Yesner, decided to do something about this unacceptable status quo. At the time, Prof. Bartlett had discovered stem cells in the adult brain and how plastic it could be. Joanna and Stewart, two formidable individuals, one a PR specialist, the other a discerning lawyer, who through sheer bad luck became quadriplegics, brought the determination to change the perception that there was no hope.
Over the decades, with strategic investment in medical research and dedicated scientists, we have come to a time when there are several areas in which experimental therapies are showing promise.
Of all of these, neurostimulation is the world’s most promising. It is already returning feeling and function to paraplegic and quadriplegic volunteers in small studies overseas and has the potential to be developed and made widely available in the short term.
With thanks to your support, SpinalCure has been able to progress neurostimulation research in Australia. In particular, we’ve been able to:
- campaign for and establish a neurostimulation research program in Australia to rigorously test and develop neurostimulation treatments and provide Australians with an opportunity to benefit from the experimental therapy
- establish the Spinal Cord Injury Research Centre at NeuRA (Neuroscience Research Australia) in Sydney
- secure approximately $12 million in funding for neurostimulation research.
This year in particular: Project Spark secured a history-making $6m from a Federal Government MRFF fund SpinalCure lobbied to be established. We also:
- continued to recruit for the eWALK clinical trial which we expect to finalise results for by the close of 2024. eWALK aims to improve walking in paraplegics and seeks to definitively answer the question – does neurostimulation work? If you or anyone you know are interested in signing up for the trial, recruitment will be closing soon and I urge you to log an enquiry ASAP so you don’t miss out on this unique opportunity
- commenced a second clinical trial called “Get a Grip” which aims to improve hand, arm and breathing function for quadriplegics
- commenced preliminary planning for the two MRFF funded clinical trials – eWALK#2 which aims to improve walking in both paraplegics and quadriplegics and RRULI which aims to test neurostimulation in combination with acute intermittent hypoxia. Both are due to start taking volunteers next year. Please keep an eye out for the recruitment call in the new year.
- established several clinical trial sites in both NSW and Victoria and commenced exploring and fundraising for a wider rollout of clinical trial sites in Perth, NZ and other Australian states
- treated more than 40 people so far, including Francois Tuyau and expect to treat hundreds more in 2024
- started working with stakeholders to explore ways to help our spinal injured friends in rural and regional Australia access the trials.
We also continued our support for A/Professor Marc Ruitenberg and his team at the University of Queensland who are leading the world in the understanding of and treatment of acute SCI.
And of course, with thanks to the generous support of Caroline Farrell, we have been able to establish the I. Peter Farrell SpinalCure Fellowship, which provides $1.5m over five years for an outstanding early-mid career researcher. We hope to award this opportunity to a scientist working on an innovative idea to cure SCI in 2024.
These achievements wouldn’t have happened if it wasn’t for the support of everyone in our community: our donors, fundraisers, ambassadors, volunteers, and partners, in particular, The CatWalk Spinal Cord Injury (SCI) Research Trust, Chris Mackinnon and his team at Lloyd’s Australia, Kerr Neilson whose vision and generosity allowed us to establish neurostimulation in Australia, the Jockeys Associations and Senator Linda Reynolds who helped us to raise much-needed funding and has continued her steadfast support for a cure.
We’ve also had the pleasure of working more closely with people in our community like Alex Richter and Knox Grammar School, Glen Noble and family, as well as Dean Martelozzo for writing to their local politicians, Caroline Tuyau, (CA) for her and her brother’s help with recruitment campaigns and Andrew Kerec who rode across Australia on a bike for months through the desert to raise funds for a cure for all people with SCI, including his father. And of course the dedication of the researchers such as Professors Simon Gandevia and Jane Butler and the team at NeuRA who work tirelessly to bring us one step closer to finding a cure for SCI.
While 2023 was a year of immense progress for SpinalCure’s mission, and while we believe the first approved treatment is only a few years away, there is still much more work to be done to achieve the ultimate goal of curing SCI. Progress of science can be frustratingly slow with the shortage of funding and the complex nature of SCI. Our promise to you is that we will keep working until we find that cure.
Next year will be SpinalCure’s 30th anniversary. We are looking forward to commencing the next stage of our journey and thanks to global consultants, Oliver Wyman and, in particular, Matthew Stewart, we have a robust strategic plan to guide us through the next five years.
This is the season we see most injuries so please go steady over the holidays. Wishing you a Merry Christmas from the SpinalCure team and we look forward to working with you in the new year to make even more progress.
Kathryn Borkovic – CEO, SpinalCure Australia