Who are FightMND?
FightMND are a charity co-founded by Neale Daniher, Pat Cunningham and Dr Ian Davis. The charity aims to raise money to fund important clinical research so that treatments or a cure for MND may be discovered. Since 2014, more than $80 million dollars have been raised by the charity. Much of this has been achieved through the annual Big Freeze event, which raises money by selling beanies. Below I have listed the three co-founders, but more information can be found on the FightMND website.
Neale Daniher
Neale is listed as co-founder and patron of the FightMND organisation. He is a champion ex-AFL player, winning Essendon’s best-and-fairest award in 1981 and coaching Melbourne Football Club for 223 games. Daniher was diagnosed with MND in 2013 and has since devoted his life to finding a cure for the disease.
Pat Cunningham
Pat is another co-founder of FightMND, with a close connection to the battle against the disease through familial loss to MND. He and Neale met through their time together in the AFL, with Pat working in football operations at Melbourne FC while Neale was coaching. While still working with FightMND, his day-to-day career is spent at a private organisation.
Dr Ian Davis
Dr Davis was a former medical doctor who tragically lost his battle with MND in 2018 after being diagnosed in 2011. He served as the inaugural chairman of the foundation while also chairing the FightMND Cure subcommittee, adding a biomedical inflection to the foundation.
What is MND?
Motor neurone disease (MND) is a group of diseases characterised by degeneration of motor neurons. It impacts 1 in 300 people and has no cure. The most common form of MND, amyotrophic lateral sclerosis (ALS), is characterised by muscle weakness, muscle stiffness and uncontrolled reflexes. Another type of MND is progressive bulbar palsy (PBP), which is believed to be a form of ALS. The difference between the two is that PBP impacts speech and swallowing muscles before anything else.
The Science
MND affects the function of neurons, the cells that comprise the nervous system and the brain. Electrical signals called action potentials travel from one end of the neuron to the other along the axon, as depicted below. Chemical signals travel from one neuron to either the next neuron, an effector cell (a muscle cell for example) or cells in the brain. The chemicals involved in neuron-neuron signalling are called neurotransmitters, and are the target of medicines like Xanax and Prozac.
Motor neurons are the type of neurons impacted by MND. They confer the aforementioned electrochemical signals, allowing decisions that are made in the brain to coordinate both skeletal muscles like our biceps and smooth muscles like our heart muscles. Upper motor neurons transfer signals from brain to brain stem and spinal cord, whereas lower motor neurons transfer signals from brain stem and spinal cord to muscles. Both of these types of motor neurons are impacted in ALS and PBP.
What’s being funded?
To properly understand how the funds raised during the Big Freeze are allocated, we can look at projects chosen for investment by FightMND. According to their 2022 annual report, of the $24.4 million raised, a staggering $13.4 million was directly invested into MND cure and treatment research. This rose to $20.2 million last year, of which $16.5 million was granted to research projects, which I have broken down below.
Clinical research
The only clinical trial that was chosen for investment by FightMND in 2023. This phase 2/3 trial, estimated to start in June 2024, tests how effectively the drug ALCAR can fight symptoms of ALS at the prescription of 1.5g/day and 3g/day determined against a placebo. The primary measurement in this study is the self-sufficiency of participants after 48 weeks. More technical details on this study can be found here.
Drug development
Seven projects have been chosen for funding, creating opportunities to develop potential therapeutics that combat MND. One such project is fronted by the University of Melbourne’s Prof. Peter Crack, whose research relates to targeting the STING protein through small molecules that prevent its inflammatory action in the brain. $550,000 was granted to this project by FightMND, which is an amount consistent with most drug development projects.
Drug Discovery
As the first stage of the Drug Development Pipeline, drug discovery occurs within research institutes to identify candidates that could be used as therapeutics. Funding for this stage attracts researchers who commit to pure research into the development of pharmaceuticals. FightMND has granted ~$1 million to four projects of this nature. An example from these projects is investigating neuronal support cells and their dysfunction in MND, undertaken by Dr Adam Walker and his team at UQ.
IMPACT
IMPACT projects, defined as IMProving and ACcelerating Translation projects, support research into MND that would otherwise struggle without third-party funding. As covered in one of our first Instagram graphics (follow us @biostache), the valley of death is one of the biggest killers of drug development. Access to funding at critical stages where there would otherwise be a gap in available capital is often vital to the progression of research. We define the valley of death as the ‘fatal gap between public and private funding’, and often nips vital projects in the bud. IMPACT funds not only this area but also aims to improve the efficiency of models for studying MND in laboratory settings. FightMND funds seven projects of this nature.
Career development
Unlike the other projects listed above, this subset of research funding largely aims to provide researchers with monetary grants to either begin or continue important research into MND. From this, two mid-career and two early-career research fellowships have been funded by FightMND at institutions across Australia.
Conclusions and disclaimers
Firstly, I would like to thank FightMND for providing some of the information in this article. I believe the work they do is incredibly important and provides imperative funding for motor neurone disease. Their technique of crowdfunding research via the footy community is both unique and accessible, giving a voice to a subset of our society that would otherwise be fiscally unheard.
I hope that through this article I have been able to shed light on how the simple act of purchasing a beanie from the supermarket can have a vital impact on development of treatments for a disease that currently doesn’t many. Granted, the end is not in sight for the battle against this condition, but FightMND provides a vital source of capital for projects at the frontline of research in these efforts.
Cover photo source: Flickerd via Wikimedia Commons