Pedalling For Progress
10 May 2019
How one family is raising funds for the UCL Huntington’s Disease Centre with a remarkable cycle ride
Kelly Terranova with her Mum, Jenny.
On May 12, 2019 one determined family and a few of their friends will take on a gruelling three-day cycle ride. They will travel the length of the country, John O’Groats to Land’s End, working in two teams of three riders taking on 50 miles at a time in a non-stop relay. Each team will sleep for only 90 minutes every 8 hours. Overall they will cover 1000 miles. For the riders, it will be brutal. But so is Huntington’s Disease - the devastating condition they will be raising money to help UCL fight.
Living for the moments
Huntington's Disease (HD) is a fatal genetic neurological condition. It usually develops in adulthood and causes abnormal involuntary movements, psychiatric symptoms and dementia. Approximately 10,000 people in the UK have HD with around 25,000 at risk. It is incurable, and no effective treatments currently exist to slow it down.
Kelly Terranova understands the realities of HD only too well. Her mum, Jenny, was diagnosed with the condition in 1995 - the first symptoms being detected when she was around 40 years old. Since then, Kelly, her sister Emma and dad Tony have battled to hold on to Jenny, a music-lover and former line-dancing teacher, and to let her experience as much of life as possible, despite the debilitating effects of the disease. Jenny is now wheelchair-bound. Her ability to communicate is severely limited. But she is still able to take pleasure in her family.
“It’s so difficult,” says Kelly. “On the one hand someone might look at Mum and wonder where the quality of life is - she has to be fed, dressed, taken to the toilet and everything. Sometimes she gets very distressed - she’ll cry before dinner sometimes like a toddler would - this irrational need to have her food straight away. She can’t really talk any more - she can just about answer simple questions like ‘tea or coffee?’.
“But then you see her with my little boy - he’s a toddler and he’ll wander over to her and put his head on her lap, and she’ll put her hand on him and you can just see it makes her so happy. So amongst all that full-time care, she does still have those tiny little joyous moments.”
Making a difference
Kelly is determined to use the struggles the family has been through over the last 25 years to help others. Through her social media accounts and her own self-help ‘positivity’ business, she has reached out to people going through similar experiences. And now, inspired by an American family with a similar history of HD, who cycled across the US and made a film called The Longest Journey, her family is taking on this epic cycle ride of their own. Kelly’s dad Tony is heading up the riders, with the teams filled out by her husband Kevin, brother in law Chris and three family friends.
All the sponsorship money from the ride will go to the UCL Huntington’s Disease Centre - an internationally renowned research facility which opened in 2016, led by Professor Sarah Tabrizi. Thanks to their recent ‘gene silencing’ breakthrough, Professor Tabrizi and her team have raised the hope that we are one step closer to an effective treatment, potentially even a cure. But to continue this vital research, the centre needs funding. In addition to research grants, private philanthropy and community fundraising form the bedrock of its financial survival and ability to continue the groundbreaking work of the team.
Supporting UCL’s research is extremely important for Kelly. “When I saw in the newspaper that UCL had made this incredible breakthrough in gene-silencing, and read about Sarah Tabrizi’s work, I decided we really wanted to support it - to donate directly towards finding a cure. That’s what people with HD really want.”
Get on board
Kelly set a sponsorship target for the cycle ride of £5,000 via her JustGiving page, but the total has already eclipsed that (at time of writing it stands at just under £9,600). “It’s fab,” says Kelly. “I really want to hit £10,000 now. Because the HD research is at the stage of human trials, and there’s been so much recent progress, people are really getting behind it. They realise that they may be contributing to something so massive - a potential cure for this disease - and it’s just such a clear, positive driver for people. It’s my driver too.”
You can sponsor the Next GENEration Cycle ride by visiting their JustGiving page. The ride will be publicised by Kelly on Instagram - follow @nextgenerationcycle - and captured by a filmmaker who is producing a documentary about the family as a further way to raise awareness of the enormous challenges HD presents. All being well, the riders will be meeting up with Jenny when they pass through Cheltenham, where she - on a specially adapted wheelchair bike - will lead them on a short stretch of their journey. “She’s the star of the show,” smiles Kelly.
UCL wishes all the Next GENEration Cycle team the very best of luck with the ride, and we sincerely thank them for their generous support.