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By Gareth Rose
TRACEY BROWN has never given in to the debilitating condition called Friedreich's ataxia, which has confined her to a wheelchair for 12 years.
Since losing the use of her legs she has learned to ride a horse, taken part in dressage competitions and competed in indoor rowing events all over the world.
Wullie and Tracey Brown indoor rowing (Picture: Ian Georgeson)
Now she and husband Wullie, from Gorebridge, are facing their biggest challenge – a 24-hour indoor rowing marathon.
Wullie, 45, will attempt to set a new British record by covering 100km in one day, while Tracey, 39, is looking to break her personal best of 50km.
The money raised will go to Ataxia UK, the charity that helps 10,000 adults like Tracey and her younger brother Christopher, who is also a sufferer, and Muirfield riding school, where Tracey rides.
But it is not just fundraising that motivates Tracey. The regular exercise slows down the effects of her degenerative muscular condition that attacks the nerves.
"Rowing is very important," she says. "It helps me tremendously. The illness affects the muscles – they can waste away – but this keeps them strong."
Tracey started indoor rowing in 2002 and has competed in indoor events in Boston, Amsterdam, Italy and Birmingham, picking up world and British medals along the way. She learned to ride in recent years, and although her balance is not good enough for the horse to go any faster than walking pace, she has competed in dressage competitions.
She said: "I started riding ten years ago – it was very scary at the time. When I'm in the chair I control my body with side panels that keep me inside it.
"When I first went riding I did not know if I would be able to stay on the horse, but I ride just like anyone else. I've been lucky because the horses I've been riding tend to be quite big and have slow movements, so if I lose my balance I can usually regain it quite quickly."
Tracey, who has rowed more than seven million miles since her husband introduced her to the sport, will be trying to break her personal best at the Celtic Manor Hotel in Newport, Wales, today and tomorrow.
At the same time Wullie, who is also his wife's full-time carer, will be one of 30 rowing enthusiasts attempting to be the first in the UK to complete 100km in 24 hours.
He said: "This will be a tough challenge but Tracey sets us all an incredible example. She'll be there, leading and inspiring everyone who's taking part.
"Because Tracey's condition is so uncommon, very little is known about it. As a result there's very little treatment for it, and unfortunately no cure.
"If we can help raise funds to help find a cure and help Muirfield riding school continue to provide its excellent services to the disabled, I hope we'll have done our part."
THE ABSENCE OF ORDER
ATAXIA means "absence of order" and people who suffer from the condition have problems with their co-ordination.
This is because the disorder affects parts of the nervous system that normally control co-ordination and balance.
Ataxia is the principal symptom of a group of neurological disorders called the cerebellar ataxia. Most are progressive and ataxia is degenerative, which means it gets worse over time. It may also be a symptom of other conditions such as multiple sclerosis or cerebral palsy.
There are many different types of cerebellar ataxia, some of which are inherited, and the most common is Friedreich's ataxia.
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Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:
1) Gene Therapy for Friedreich's Ataxia research project:
The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.
2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.
The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.