to Race 100km for Rare Disease Research
Finding a cure for a rare disease is a challenge, especially when nobody knows about it. Sue Browning from Gillingham and Adrian Geal from Motcombe, however, have decided to take on that challenge by raising much needed awareness and funds to find a cure for an autoimmune disease called Scleroderma. They are doing it by running the 100km ‘Race to the Stones’ this coming July.
Scleroderma affects just 12,000 people in the UK – the population of Gillingham. It causes the skin to tighten and thicken to the extent that sufferers can hardly move. It can also affect the heart, lungs and kidneys and, without a cure, it can be fatal.
Sue explains why she and Adrian have chosen the Race to the Stones to raise money for Scleroderma: “Adrian and I have a close friend, Sarah Lloyd, who developed severe Scleroderma in 2015. Whenever we mentioned it to others, they’d never heard of it.
“But we saw how badly and quickly it affected Sarah. Over a short period of time, she lost her ability to do the smallest and simplest of things. It was soul-destroying to see her deteriorate so fast. This race will be a challenge. But, so is living with Scleroderma and we want to do all we can.”
Sarah, who lives in Motcombe, was lucky to be given a life-line. In May last year, she had a stem cell transplant, which involved destroying her old immune system with intensive, high-dose chemotherapy and creating a new immune system using her own, previously harvested stem cells.
Sarah says: “I had tried every medication under the sun, but nothing worked. The transplant was very risky and it was a last resort. But it is working. I need to be patient as my recovery will take several years. There are, however, many sufferers who can’t have such treatment and finding a cure for them is vital.”
Sarah has been treated by the Royal Free Hospital in London since 1992. The Scleroderma Unit there is the largest in the UK to specialise in the treatment and research of Scleroderma. Sarah continues:
“My specialist, Professor Chris Denton, has spent more than 25 years trying to find a cure. I am so grateful, not just to him for giving me the transplant, but to Adrian and Sue for helping to raise funds for Professor Denton’s research. If I could join them, I would. I am just not there yet.”
The ‘Race to the Stones’ is known as the UK’s #1 Ultra Marathon. Sue says: “We want to complete the race in less than 24 hours and, in doing so, raise as much money as possible to find a cure for this devastating disease. We are very grateful for all the support we can get!”
To support Sue and Adrian, go to their Just Giving page:
All funds raised will go straight to Professor Denton’s Royal Free Scleroderma Unit and will be gratefully received.
For further information about Scleroderma, contact Sarah Lloyd, 07793 780931.