Sandra Bullock is the latest high-profile personality to speak of her experiences with MND, known as ALS or Lou Gehrig’s disease in the US, after her late partner Bryan Randall passed away from the condition in 2023 at age 57.
She has reportedly spoken out about her late partner’s MND on an upcoming episode of the SmartLess Podcast, hosted by Jason Bateman, Sean Hayes, and Will Arnett.
“He asked me not to share. I know why he asked me not to. My sister was the only one who knew for a while,” Bullock has reportedly told listeners.
“At first I go, ‘Oh, I can handle that. I can be quiet. I don’t wanna harm others because of what I do’. So I think not talking for a while was good.”
While respecting Randall's wishes in not discussing his diagnosis publicly as he faced ALS in the midst of the COVID pandemic, media have reported that Bullock has said maintaining secrecy ‘isolated her in the process’.
“The entire world was locked in with a pandemic. It was literally like the final diagnosis, even though, he was ill for half of our relationship,” she said.
“The diagnosis came almost at the same time as the cloak of the pandemic. So as the pandemic came down, and I have a child with severe asthma, I was panicking.”
“I had two young kids, that were navigating it, especially a little girl who saw him as a father figure... I wasn’t allowed to tell anybody. My sister was the only one who knew for, for a while. It’s a huge weight.”
Bullock’s experiences demonstrate some of the immense impact that an MND diagnosis has on those diagnosed, as well as their carers and loved ones.
With only a small percentage of MND cases having a genetic basis, the debilitating condition can affect adults right across the community - on average, each day two people die from MND and two people are diagnosed with MND in Australia.
A study published in the Medical Journal of Australia earlier this year found that deaths from MND in Australia have more than tripled over the past 37 years. The researchers found more men than women passed away from MND over this period, with more deaths due to MND occurring in inner and outer regional areas than in major cities.
However, media have reported that Bullock began grieving her partner years before he succumbed to the disease.
“I think where he was in his journey, both physically and mentally, I started grieving Bryan four years before he passed,” she shared. “There was something that had shifted.”
“My person left a lot earlier than the body left. I don’t think I ever dealt with that until after he passed, because you’re just on this treadmill.”
Bullock’s comments highlight the need for community and ongoing support of those diagnosed with MND as they battle the devastating condition, as well as for their carers and family.
Currently MND NSW supports over 700 people facing motor neurone disease and their families across NSW, the ACT and NT.
In the past 12 months, we have provided 3020 support activities, including phone and email contact, and supported 304 people diagnosed with the condition to access our support services for the first time.
One person accessing our MND Info Line told us that ‘an understanding voice is very confiding. It sounds like MND NSW will be of great help to me and my wife.’
Over the same timeframe, MND NSW has also supported over 200 people caring for a person living with MND - providing 20 carer support groups to more than 100 attendees, and a number of webinars to over 100 carers on topics relevant to them.
One carer support group attendee said 'it was very helpful to me to learn of other people’s experiences and the journey we are all on'.
A survey carried out in 2025 of people with lived experience of MND by independent consultants ACIL Allen in partnership with MND Australia and FightMND, found that carers of a person living with MND reported a lower quality of life than others impacted by MND.
It stated that barriers for carers aligned with those for people living with MND - including the lack of knowledge of MND among paid carers, and funding limitations to access to equipment and modifications. These outcomes were reportedly worse for people in regional areas and without government assistance - highlighting the need for organisations like MND NSW to provide vital support, information and assistive equipment.
The survey also found that people with lived experience of MND completing the survey reported that connection to family, friends and community improves quality of life for people living with MND, however, this is reliant on people having access to services and supports that meets their needs.
Learn more about MND and its impact here. You can find out more about how you can help families facing MND here.
