Former Glasgow chief takes on ultra-rare condition with pedal power

As a former chief executive of Glasgow Warriors and Glasgow Hawks, an age-grade international and stalwart of the club scene in Scotland’s largest city, Kenny Baillie is more than familiar with the lay of his native land despite having spent the last decade living and working in London.
Even so, the 48-year-old will be getting up close and personal with the terrain in a whole new way this weekend as he supports a close friend, Charlie Dixon, in his efforts to raise vital funds for research into the ultra-rare disease which has affected two of his three children.
Baillie will join Dixon on a tandem for the first two days of a cycle from John o’Groats to Land’s End in aid of Cure DHDDS, a charity set up by Dixon and his wife Mel to try to fill the vacuum of support and treatment available to those afflicted by this genetic mutation.
Tom (15) and Rosie (9) Dixon are two of only 70 recorded DHDDS cases worldwide, a full genome sequencing having been required to diagnose what was causing their tremors, seizures and developmental delays. Those with DHDDS often experience ataxia, learning difficulties and autistic traits.
The condition is degenerative, and with no bespoke treatment available, the best hope of slowing and perhaps eventually stopping its effects lies in repurposing drugs already in use for other diseases or gene therapy, which costs millions.
Cure DHDDS has raised more than £300,000 to fund research projects through medical professionals across the globe, and this cycle has already brought in close to a further £50,000.
Dixon will don a lab coat at the back of the tandem, a visual reminder of what this is all about. Baillie, for his part, has signed up to do the first 211 miles, from John O’Groats to Carrbridge via an overnight stop in Lairg.
“I’m not a great lover of cycling, I have to say,” the former half back admits. “But it’s a tiny bit of effort in the context of a much bigger challenge. We and the Dixons live in the same part of London, Sheen, and their middle child, Harry, is in the same year as our oldest boy, George. They play together for the London Scottish under-12s.
“Charlie, Mel and the rest of their family have been through an incredibly tough time. For one of their children to have this ultra-rare condition was a total freak case, and then to have two was literally unbelievable, not least because nobody else in the family seems to have the same gene mutation.
“Charlie and Mel are at a point now where their strategy is to help find a way of repurposing current drug development; help find something that could ultimately just slow down the tremors, slow down the seizures, slow down the degenerative element to all of this, so that the children can enjoy a better quality of life.
“The clock is very much ticking if they are going to find a repurposed drug or drugs to help slow it down, and then ultimately hopefully cure it. Mel has made it her mission to become an expert in this field — she goes to conferences, she sits on panels, she’s never off her laptop researching it, globally she knows all the best scientists that are potentially able to help. And so it’s now really a case of being able to raise the money and get it to the right areas of research.
“When your mate is in need, you step up. And Charlie knew that if he did this on a tandem, mugs like me would get involved, do our own fundraising and give a bit of a multiplier effect.
“He was initially thinking he would get 10 riders for the 10 days, but not many people fancied doing the northwest Highlands so I’m doing two. Ultimately the dream is for a company watching or reading to get on board and donate, because it strikes a chord or aligns with their own community or values.”
Baillie is making no promises when it comes to athletic prowess. “We’ve been out three times on the tandem and the longest ride we’ve done is 30 miles, from Sheen to Cobham, to the south of London: 15 miles there, 15 miles back. The fact that we found the gentle incline into Cobham — before we stopped for coffee — a bit tough doesn’t bode well for the rugged, mountainous Highlands!”
“We’re good mates, but even so we’ll eventually run out of conversation. There are only so many times I can moan at him about Rangers, and there’s only so many times he can talk me into the idea of Ipswich managing to survive in the Premier League. Charlie’s doing 10 days, so he needs to conserve his energy, because the front is quite a lot harder and actually going downhill is harder than going uphill.
“Tandems are not that stable, and you pick up quite a head of steam quite quickly, so I think, you know, we’ll be breaking, almost as soon as we get to the top of one of these mountains, we’ll be breaking and then crawling, and getting freezing cold, and then gearing ourselves up for another mountain.
“A couple of guys from Charlie’s work are doing the first five days, so in true peloton style they can break from the front . . . two solo riders in front of the tandem. We found out recently that doing it this way round, from north to south, he’ll have a headwind top to bottom, whereas if he’d gone the other way, he’d have had a nice tailwind. You live and learn.”
Post-Scotstoun, Baillie was chief executive of London Scottish then spent seven years as director of partnerships and communications with British Rowing. He is now applying his extensive knowledge and experience supporting investors, governing bodies, teams and grassroots projects in the sports marketing and sponsorship space alongside a role as chief strategy officer for the consortium seeking to revive Wasps, either in the English Premiership or Championship or via the more radical solution of a run at the URC.
Identifying opportunities and working them through with political and commercial nous is Baillie’s bread and butter. This weekend he will be right out of his comfort zone, but in those darker moments when the burn really bites, he won’t have far to look for inspiration.
To find out more about DHDDS and efforts to combat it, see: https://www.justgiving.com/team/curedhddsbikeride