Cycling for a dementia cure

By Róisín McManus

As the FTD Brothers embarked on the Cavan leg of their Irish marathon challenge in May, one Cavan man was there to show his support for a disease that has impacted his life.

When Pierre Sullivan’s mother was diagnosed with dementia in 2016, he didn’t know where to turn. After being told there was no cure, the Shercock native embarked on a mission to raise awareness of an illness about which he felt there was little understanding.

He returned to Australia, where he has been living the past 20 years, and set up the ‘Bondi 2 Berry’ fundraising cycle with a friend. They have so far raised more than $2.6M (AUD) in funding for dementia research.

Dementia, including Alzheimer’s disease, is the leading cause of death in Australia. There are an estimated 446,500 Australians living with dementia and, without intervention, this figure is expected to increase to one million by 2065.

Pierre and his wife first had an “inkling” that something was awry when his mother went to Australia for their wedding in 2014, but they ultimately put it down to her being in an unfamiliar environment.

Eighteen months later, when they travelled back to Ireland for Christmas in 2015, they noticed she was “quite anxious” in her own home, forgetting things and her memory had deteriorated “quite a lot”.

With some encouragement from his wife, Pierre brought his mother to the doctor in the first week of January 2016. Following some basic tests, she received a diagnosis of dementia at 63 years of age.

“Much to [his] shock,” he was told there was “nothing” they could do as there is no cure.

“I just felt it to be really cold, really non-supportive, and then I really struggled to get any help,” Pierre recalls.

“I found that I was really isolated, I really didn’t get any support at all, and struggled to get knowledge on the situation and how I was going to help mam.”

His mother, he says, was also left in a “void”, as he couldn’t get her into an age care home until she was 65.

When Pierre returned to Australia, he reconnected with Nick Young, a friend he made through cycling, whose dad also had dementia. Despite knowing each other for several years, their parents’ shared diagnosis was something they “never discussed”.

“Both of us said: We’re similar in experience in the fact that one of our parents have been diagnosed with dementia early, we’re struggling to get any kind of support,” Pierre remembers.

The two friends put their heads together to think about how they could generate support and funds for dementia. Naturally, a bike ride topped the list as they have friends within those circles and there is a strong community among them.

Nick, who is Australian, is an event organiser, so the process of setting up the fundraising cycle came “quite natural” to him. They got a few friends together and picked a date in September to mark Dementia Awareness Month.

They decided to ride 155km from Bondi to Berry, which is on the South Coast of New South Wales. Having intended for around 20 people to take part, in the end, they had “quite a lot of support” with two groups of 20 riders each, and they raised $53,000AUD.

“Let’s say it was successful, everybody loved it,” Pierre enthuses.

They partnered with Dementia Australia and gave them the proceeds. In 2017, they advertised the cycle again and increased the number of participants. The ride sold out in three days, with a total of 60 riders registered, and a waitlist of 25 people. They organised a proper training structure that year for those taking part with less cycling experience who still wanted to support the cause.

As the awareness “became more widespread”, more cyclists with connections to dementia started to enquire about it.

“What we noticed on those training rides was everybody knew my story and Nick’s story, and a lot of people found it very comfortable to talk to us about their story,” Pierre says.

“We also encouraged everybody to engage with riders they didn’t know and talk about why they’re doing the ride.”

The fundraising cycle created a “real community to openly talk about dementia”.

“When I told my story about how I had ridden with Nick for years and we never spoke about dementia, it kind of proved that there’s still unfortunately a huge stigma attached to a mental illness that people don’t want to talk about unless they feel safe to talk about it,” Pierre says.

“For most of my rides, people know who I am so they’ll come and introduce themselves but then they’ll openly talk about their story and how difficult it is.”

From there, the ride continued to grow year on year, and in 2019, they did their first multi-day event, riding from Sydney to Berry on the first day, and then riding more than 1,000km to Melbourne over the remaining eight days.

Similar multi-day cycles were arranged in subsequent years to places including the Blue Mountains and the Borossa Valley, and there are now around 200 riders taking part each year.

In 2022, they felt the ‘Bondi 2 Berry’ name was too specific to an individual ride. They also formed their own - ‘Dementia Research Community’ in 2022.

Their charity funds research grants as they believe that is the “best place” for the money to go, and is open to applications from anybody associated with the development of knowledge for dementia.

To date, they have funded 13 grants, and have raised more than $2.6MAUD for research.

One example of a project with which they are involved, based in Sydney’s Macquarie University, evaluates therapeutic delivery to advance crucial research into Frontotemporal Dementia (FTD) - the most common form of dementia in individuals under 60 years.

“For us, we never expected it to get to where it is today,” Pierre acknowlegdes.

“One of the things that both myself and Nick are most proud of is supporting people who feel isolated.

“Our mission was always to raise funds and awareness and we’ll continue to do that. Now that we’ve got our own charity, everything is within our control.”

Pierre also joined the FTD Brothers in Tullamore, Mullingar and Dublin. The brothers, he feels, created an “incredible” level of awareness of dementia, and he was “very proud to have some involvement in it”.

He spoke to both brothers and their partners, and they know about the Dementia Research Community. They will “continue to connect”, and hopefully be able to do something together and support each other in future.

“It was an incredibly challenging and brave thing to do, and you can see they’re so passionate about what they do and they’ve got this ability to bring people along with them, which is pretty amazing to see.

“I really am hopeful that they get the support from the governments that they deserve because it’s incredible what they’re doing.

“If the government is not supporting and trying to prevent this dementia epidemic from happening, it’s going to be pretty serious for the health system in ten years time in every country, not just Ireland and Australia.”