Dad battling MND says Ireland needs figure to spearhead fight against disease

Irish Daily Mirror

9 hours ago

A Dublin dad battling motor neuron disease says Ireland needs a high-profile figure to spearhead the fight against the debilitating disease.
Andrés Estevez-Guersanik, who moved to Dublin from Argentina 20 years ago, was diagnosed with MND in 2023.
He said this country lacks a visible champion for the cause when compared to the UK.
Figures like the late Doddie Weir and Rob Burrow, along with Kevin Sinfield, Rob Wainwright and Kenny Logan, have shaped how the public in the UK views the illness.
He said: 'We had Charlie Bird and Fr Tony Coote. They made such a difference as they got the nation talking, but they're not here anymore and no one has stepped in. And without that voice, that figure, the momentum is at risk of fading.
'We need someone new to carry the torch for awareness and to change how people treat this disease, how quickly you're diagnosed, how services work. That only happens when someone with a platform says, 'Enough.' When they say, 'This matters'.'
It comes as Scotland rugby legend Kenny Logan takes part in a 555-mile cycle to raise funds for My Name'5 Doddie Foundation, a charity committed to funding research to find effective treatments for motor neuron disease.
The charity cycle will end in Dublin, ahead of the British & Irish Lions test against Argentina on Friday.
The 30+ strong team, which has cycled more than 100 miles each day, including a gruelling section of climbing between Waterford and Wicklow on Thursday, will arrive in Dublin at the Talbot Hotel in Stillorgan.
The team has already broken the £500,000 (approximately €585,300) fundraising barrier, and now has its sights set on raising as much money as possible for My Name'5 Doddie Foundation and the Irish Motor Neuron Disease Association.
Andres added: 'Kenny, Ally McCoist, Gabby Logan and the team cycling across Ireland to raise awareness for MND, and delivering the match ball here in Dublin, is a powerful gesture.
'It puts a spotlight on something that desperately needs attention while raising significant, much-needed, funds for research through My Name'5 Doddie Foundation.
'But it also shows the gap. Public figures showing their support gives people a way to connect with the disease. They bring it into the light. Here in Ireland, we need someone to drive the issue forward.'
Andrés revealed he first noticed a cramp in his hand while cycling in Majorca and this led to his diagnosis.
He explained: 'Five years ago I'd have been right there on the road with them. I miss all of it – the sport, the chat, the freedom. But I can still raise awareness, speak up, and try to help people understand this disease better.'
The Argentinian is currently waiting for a hospice bed to provide some respite care.
Before his diagnosis, he was a dedicated runner, cyclist, and, by his own admission, 'a talker'.
MND has weakened his voice significantly, but he remains incredibly positive and determined to help others.
He said: 'Awareness leads to dignity, funding, and practical change – from better access to public spaces to improved services and faster diagnosis, because otherwise, you lose time. And with MND, time is everything.
'When people understand something, they respond differently. That's what public figures help with. They change how people behave and that's the shift we need in Ireland. Because MND can happen to anyone, and people deserve better when it does.
The 45-year-old added: 'As more people are diagnosed, the wonderful MND organisations out there – like the Irish Motor Neurone Disease Association for care and My Name'5 Doddie Foundation for research – need more funding. And what gets noticed, gets funded.'
Kenny Logan has led a team of celebrities on the cycle, including his wife, broadcaster Gabby Logan, football legend Ally McCoist, and actor Jamie Bamber. The group stopped at the home clubs of Lions' legends throughout the country.
The former Scotland winger said: 'Doddie put MND on the map, and we're committed to carrying on his legacy. If this ride helps shine a light and inspires someone in Irish sport to pick up the torch, then it's already a success.
'We've had an unbelievable time in Ireland and it's been incredible to meet members of the rugby and MND communities who have welcomed us with open arms. We're all excited to get to the Aviva to watch the game with Andrés – even though we'll be cheering on different sides!'