In 1984, and at the age of 13, Penny Rudge Uglow was told that she was going blind, and that nothing could be done to stop it. She has now set a challenge of completing 100K of the Yorkshire Ultra Challenge to help raise research funds.
- Penny is undertaking the 100K challenge with James Winder, who will be her guide.
- Retinitis pigmentos is generally is diagnosed at around aged 13 and leads to the gradual deterioration of the cells on the retina of the eye
- Sight loss starts with the peripheral vision, with the central vision remaining the longest, due to the greater density of receptors
- The challenge is about raising as much as possible to pay for research that would provide a treatment that would stop the deterioration
- That treatment would be truly transformational for those recently diagnosed
- The Yorkshire Challenge is 23-24 July 2022
The condition has meant the light receptors in her eyes (that’s the rods and cones on the retina) didn’t replace themselves, as they should. Her vision has become progressively more narrow, and today has around a 2 to 3 degree field of vision – the central part of vision remains the longest, as it has the greatest density of rods and cones.
Penny had been undertaking fitness training with James Winder, and Penny put the idea to him as she wanted to do a proper challenge.
James said:
Penny has literally roped me into doing 100k in one go!
It’s the Yorkshire Ultra Challenge that comes in and out of Pateley Bridge in a big figure of eight loop. It’s 25K out and back again, and you do it enough times to make 100K.
There was an option to do 50k or even 25k, and spread it over the weekend, but Penny said let’s do the full one, and do it continuously.
Penny said:
I have a condition called Retinitis pigmentosa, which is the most common cause of blindness in young people. It’s an inherited condition, and you lose your sight gradually over time.
As a child, I didn’t have night vision, and then my peripheral vision began to slowly close in to tunnel vision. My central vision is now only around 2 or 3 degrees. Those 2 or 3 degrees are spotty and blurred – so there is very little vision now.
The cells in your eyes, are like other cells in your body, continually replacing. I have a fault in one gene, meaning i don’t produce the protein needed for that to happen. So when the cells in my eyes die, they don’t get replaced.
Guiding a runner is a big task. The two runners hold a tether between them, but the guide needs to also give a commentary on the terrain or potential obstacles. Between them, they have developed a short-code language to more easily convey what Penny needs to know.
- 100k is 62.2 miles
- Two whole marathons and one-third of a marathon
- Or Harrogate to Newcastle as the crow flies
- Or go east, you end up 4 miles into the North Sea, go west you are 3 miles in to the Irish Sea
Penny will complete the challenge for Retina UK to help research in this area. The current research wouldn’t replace the cells that Penny has lost, but it could slow the progression, and be really significant for those younger to retain more sight.
Penny said:
Retina UK is a charity raising money into research, Retinitis pigmentosa covers a number of conditions, each with their own specific gene that causes it, so each of those needs their own gene therapy solution.
There is a lot of research that needs to be done. I am taking part in a clinical trial where the protein will be injected into my eye. That would potentially halt the sight loss, and for somebody a lot younger than me would be amazing.
Even the tiniest amount of sight makes a huge difference.
A treatment for a 13 or 14-year-old would be transformational for them.
See the Just Giving page at Penny Rudge Uglow is fundraising for Retina UK (justgiving.com)
or to learn more about Retina UK see Home – Retina UK
