Famous people with motor neurone disease 

Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS) in some regions, is a progressive neurological condition that affects motor neurons, leading to muscle weakness, paralysis, and loss of motor functions. While MND is often recognised for its devastating effects, the stories of famous individuals who live and have lived with the disease have brought immense awareness to its impact. These notable figures have inspired many, advocating for further research, support, and understanding of the condition.

Motor neurone disease affects people from all walks of life, and its impact has been particularly poignant for many well-known individuals. Here’s a look at some famous figures who have lived with / are currently living with MND:

Prominent Australians and Local MND Advocates

Neale Daniher – Football Player and FightMND Founder

Neale Daniher, a former Australian rules football player and coach, was diagnosed with MND in 2014. Since then, Daniher has become one of the most prominent advocates for MND research in Australia. He founded FightMND, a charity dedicated to raising funds and awareness for research into MND. Despite his diagnosis, Daniher has continued to inspire others with his determination and leadership, becoming a symbol of resilience in the face of the disease.

Emma Vulin – Victorian State MP

Emma Vulin, Member for Pakenham, was diagnosed with MND in April 2024. Despite the challenges, she remains committed to serving her community and has used her platform to advocate for improved accessibility in Parliament and legislative changes for those with terminal illnesses. Emma was featured in MND Victoria’s 2025 Christmas Appeal.

Fiona MacDonald – TV Personality

A beloved children's TV host (Wombat) and presenter (It's a Knockout), Fiona MacDonald was diagnosed with MND in 2021. In 2023, she undertook "It's a Big Lap," a 15,500km drive around Australia with her sister to raise funds for MND research before her passing in October 2024.

Professor Justin Yerbury AM – Renowned Researcher

A molecular biologist who lost multiple family members to a familial form of MND, Justin Yerbury dedicated his career to finding a cure. Diagnosed himself in 2016, he continued his groundbreaking research at the University of Wollongong until his passing in 2023.

Carl Webb – Rugby League International

The former NRL star (Broncos, Cowboys, Eels) was diagnosed in 2020, aged 39. He established the Carl Webb Foundation to support families affected by MND and provide grants to fill funding gaps before passing away in late 2023.

Pro Hart – Iconic Outback Artist

Considered the father of the Australian Outback painting movement, the Broken Hill artist developed MND in his later years. Pro Hart was unable to paint for the final six months of his life and passed away in 2006, receiving the first state funeral in New South Wales held west of the Blue Mountains.

David Niven – Academy Award-Winning Actor

Though a Hollywood icon, David Niven had deep connections to the international MND community. His battle with the disease in the early 1980s, marked by a thumbs up gesture that became a symbol for the MND Association, brought early global attention to the condition.

International MND Figures

Eric Dane – Actor

Famous for playing Dr Mark ‘McSteamy’ Sloan in Grey’s Anatomy and Cal Jacobs in Euphoria, Eric Dane was diagnosed with MND in 2025. Since his diagnosis, Eric is using his platform to advocate for increased awareness of the condition and raising money for further research. In November 2025, Eric guest starred as a firefighter with ALS in Brilliant Minds, mirroring his real-life diagnosis.

Stephen Hawking – Physicist

Perhaps the most famous person with motor neurone disease, Stephen Hawking was diagnosed with ALS[1] at the age of 21. Despite being given just two years to live, Hawking defied all odds and lived for more than 55 years with the disease. His groundbreaking work in cosmology, particularly on black holes and Hawking radiation, has left an indelible mark on science. Hawking's story of survival and resilience remains an inspiration to millions around the world.

Lou Gehrig – The Face of ALS in America

Known as "The Iron Horse" of baseball, Lou Gehrig's name became synonymous with ALS after his diagnosis in 1939. His emotional farewell speech at Yankee Stadium, where he declared himself "the luckiest man on the face of the Earth," is a moment that has remained etched in history. Gehrig’s legacy not only helped raise awareness for ALS but also led to the disease being referred to as “Lou Gehrig’s Disease” in the United States.

Rob Burrow – Rugby Player

A former rugby player for Leeds Rhinos, Rob Burrow was diagnosed with MND in 2019 at the age of 37. He unfortunately passed away in June 2024. His diagnosis has been particularly significant in raising awareness of MND within the UK sports community. Burrow has become an advocate for MND research and support, documenting his journey in the moving BBC documentary "Rob Burrow: My Year of Living with MND."

Jason Becker – Musician

Jason Becker is a legendary guitarist and composer who was diagnosed with ALS in 1989 at the age of 20. Despite being given only a few years to live, Becker has lived for more than 30 years with the disease, continuing to compose music with the help of a computer-based system that tracks his eye movements. His resilience and ongoing musical output have made him an icon for MND awareness.

The Impact of Famous People with MND

The stories of famous individuals who have lived with motor neurone disease have played a pivotal role in increasing public awareness of this devastating condition. Whether through sports, music, or science, these figures have inspired many with their strength and advocacy for MND research, care and support. If you or someone you know is affected by MND, organisations like MND Victoria provide vital resources, from counselling and equipment support to advocacy and fundraising efforts.