The London hurler taking the fight to MND

London hurler taking fight Motor Neurone Disease. Photo: Sheila Fernandes
Alan Griffith in action for London against Kildare at McGovern Park in the NHL Div 2A

The London hurler who’s at the forefront of the search for a cure for Motor Neurone Disease

By Damian Dolan

Alan Griffith speaks as passionately about his work as he does hurling, and perhaps even more so. A doctor, with a PhD in viral genetics and a degree in biotechnology, Griffith is Head of Molecular Development at a UCL spinout company.

It equates to a ‘novel’ approach in treating inherited eye diseases, including those which affect children aged between 6-18 months. It involves the administering of a genetically modified virus, either into the back of the retina or intravenously.

The job of the virus is to affect a cell, or gene, and input its own DNA/RNA.

The former Wexford U21 hurler, who won a senior Wexford championship with Shelmaliers in 2014 and a London intermediate title with Fr Murphy’s in 2016, freely admits that he often ‘loses people’ when he gets down to the ‘nitty-gritty’ of what he actually does. Not least his teammates.

“I get a lot of stick obviously because sometimes I have to miss training because I’m doing clinical sampling,” Griffith told the Irish World. There’s few that can offer up that excuse for missing a session.

Patients are already reporting ‘systematic releases’ of their eye diseases, and the goal now for Griffith is to get through phase 3 clinical trials and then market authorisation.

London hurler taking fight Motor Neurone Disease

“We can’t obviously repair eyes damaged by an accident, but if it’s a genetic defect or neurodegenerative genetic issue, that’s something we’re able to remedy by genetically modifying a virus and then putting in a good copy of the defective gene,” said Griffith.

It’s a hugely significant development in the scientific and medical worlds, and using the same platform one that could lead to a cure for motor neurone disease (MND), or amyotrophic lateral sclerosis (ALS) as it’s known in the USA.

MND affects the nerves (motor neurones) in the brain and spinal cord that tell our muscles what to do. It’s a cruel degenerative disease which gradually strips the sufferer of their ability to swallow, talk, walk, and ultimately breath.

It affects up to 5,000 adults in the UK at any one time. In Ireland the figure is 350. Average life expectancy is from two to five years from onset of symptoms.

The Ice Bucket Challenge in 2014, which saw more than 17 million people upload videos to Facebook, and the recent passing of renowned theoretical physicist Stephen Hawking, as well as Irish World columnist and RTE racing broadcaster Colm Murray and South African rugby World Cup winner Joost van der Westhuizen, have raised the profile of this devastating disease.

London hurler taking fight Motor Neurone Disease
Groups working with virus in the lab at University College London

There is currently no cure, but one may not be as far away as some might think, with ‘great strides been made’, and Griffiths group is amongst those at the forefront.

“I’ve designed a virus that’s going to be used to treat the ALS patient,” he explained.

“It’s good that it’s known that there are people in the world working on these things. There’s companies like ourselves that are trying to do it very rapidly.”

With less people affected by MND than some other diseases, advances have been slower, but they are now happening. A cure could even be a matter of just years away, rather than decades.

Griffith added: “We’ve shown that by putting in a good copy the gene that’s defective in ALS/Parkinsons/Achromatopsia we can potentially reverse the effects in smaller model organisms. The next step for any company at this juncture is to open a clinical trial to try and to see the benefit in humans.”

Getting a treatment through trials to the patient as quickly as possible is a side of the business Griffith and his colleagues are ‘trying to work on’. It’s a case of working with the authorising bodies, The Food and Drug Administration (FDA) and The Health and Safety Executive (HSE) to ‘shave a few years off’ its development to shorten, without compromising, the process.

London hurler taking fight Motor Neurone Disease
Alan in action for London against Kildare. Photo: Sheila Fernandes

“As a trendsetter in this field we’re trying to do a paradigm shift in the regulatory authority’s thinking, because some of our gene therapy viral genetic manipulations are something that the FDA don’t even know about. So we have to bring them along for the journey as well,” said Griffith.

“It’s a big drive for us. Diseases like Parkinson’s have well-defined therapeutics that can treat patients. ALS for example doesn’t have anything that can treat it in any way shape or form.”

The only caveat to the viral genetically modified virus platform is it must be mono-genetic. In other words, it has to be one gene.

Griffith added: “What’s the most efficient delivery vehicle? Viruses. We use a virus as a delivery mechanism in order to get our good copy of our gene in.

“If you look at this as a global platform, this can be used for cancer treatment, Parkinson’s, ALS and ocular diseases, as long as it’s all single gene defects. That’s the crux of the matter.”

London hurler taking fight Motor Neurone Disease
31 May 2006; Brendan McEvoy, Laois, in action against Nick Kirwan, left, and Alan Griffith, Wexford. Leinster U21 Hurling Championship, Laois v Wexford, O’Moore Park, Portlaoise, Co. Laois. Picture credit: Pat Murphy / SPORTSFILE

While other companies are in a similar position with regards to an MND programme, Only a few companies are using a viral modification platform.

“There’s a lot a stake; the whole reason I got into science and medicine is to benefit the patient,” he said.

“I have a weakness for people who need treatment and I don’t think money should be the deciding factor as to whether people get treatment or not. It should be open access for everyone.”

Combining his work and hurling can be difficult. A motorbike, however, allows him to make it to London training from his Old Street office, near Moorfields Eye Hospital, or from Bristol, Oxford or Cambridge. His hurleys slung over the back.

It’s a sight which has led to him been stopped by bemused police officers, amidst concerns that be might be on his way to rob a bank. Or photographed repeatedly as he weaves through London’s busy streets. It’s testament to his commitment.

London hurler taking fight Motor Neurone Disease
Have hurley will travel – Alan’s essential mode of transport

“The GAA career is very short-lived; I want to make the most of it,” says the 31-year-old, who was brought onto the London panel by manager Fergus McMahon last year on the back of helping Murphy’s to intermediate success in 2016.

“It is hard to balance the job and sport. County standard is so high. I didn’t think I’d be able to do both, but they’ve been quite lenient with me. If I have to miss training here or there, they’ll let me,” says Griffith, who fits in gym sessions when and where he can.

“We [London] had a really good team [last year], but we just didn’t push on. We had a decent league; although we nearly got relegated we either drew or got beaten by a point or two in every game,” recalls Griffith.

“This year we were well beaten in the first few games, but then came good near the end.”
After heavy defeats at the hands of Kerry, Meath and Carlow, a creditable five-point loss to beaten finalists Westmeath was followed by an impressive win over Kildare in the sides’ Division 2A relegation decider.

A confidence boosting victory to take into a Christy Ring Cup thrown wide open by the introduction of the Joe McDonagh Cup.

London hurler taking fight Motor Neurone Disease
2 February 2011; Alan Griffith, left, and Aidan Moran, Dublin City University, in action against Paul Kelly and Michael Heffernan, right, University of Limerick. Ulster Bank Fitzgibbon Cup, Group 2, Dublin City University v University of Limerick, O’Toole’s GAA Club, Pairc Uí Thuathail, Blunden Drive, Dublin. Picture credit: Brian Lawless / SPORTSFILE

“There’s 30-32 guys at training and everyone is pushing hard for a place. The positions are picked on form – Fergus, Mick O’Dwyer and Mick Gordon really focus on that – which is good,” he said.

“You want to create a nice competitive environment for each player and you want to express yourself.”

London won’t be taking ‘anything for granted’ against Derry on May 12, or Down and Armagh, but for Griffith and his fellow Exiles there’s more than element of ‘unfinished business’ about 2018.

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