The James Ferguson LHON Research Fund
The James Ferguson Fund was founded in 2008 to help finance research into the cures, preventions and treatments for Leber’s Hereditary Optic Neuropathy (LHON).
James developed the degenerative eye condition whilst travelling, leaving him virtually blind. Whilst LHON cut James's travels short and changed his life, it encouraged him to raise awareness and seek answers, which led him to Newcastle University and Professor Patrick Chinnery, a world leader in this field of research.
In the last two years, James has completed a triathlon and cycled 550 miles around the UK on a tandem with his partner Beth, raising over £10,000 for LHON research. 
You can read about the challenges on his blog.
All money donated to this fund will go directly to Professor Chinnery's research team at Newcastle University. You can donate by selecting the James Ferguson Fund on our donation page.
What is LHON?
We asked Professor Chinnery for an explanation: 'LHON is a devastating eye disease that causes irreversible blindness and hits otherwise healthy people in their mid-20s. Unfortunately there are no treatments for the condition. We need to know much more about the cause of LHON so we can develop new treatments. This is a major focus of my research group.'
James’s story
‘I have been a sufferer of LHON for just over eighteen months. As a twenty three year old man I had travelled through South America and had settled in Santiago, Chile, where I had found work teaching English. As I had begun working my vision started rapidly decreasing. After spending about six weeks seeing an eye specialist in Chile and having numerous tests, I returned home to try to find a diagnosis for my mystery condition that was reducing my vision to frighteningly low levels.
‘On return to Manchester an eye specialist diagnosed my condition as LHON, and my life was changed forever. There is currently no cure for LHON, partly due its rarity, reducing the amount of research into the condition. After investigating, I met Professor Chinnery in Newcastle and was introduced to the work of his research team are. I believe the work they are doing is highly commendable and will help many young people in my position in the future.
‘I am now working at Groundwork Oldham & Rochdale, a regeneration charity, and have done so for the past year and half whilst living independently in Manchester. I am determined to help further the research team in Newcastle by raising money for their work and as part of this I am biking 550 miles across the UK in April 2009. Due to my low levels of vision I will be cycling on a tandem with my training partner, Beth. I would appreciate any donations to this fund to support the work of the research team at Newcastle University. Thank you.'
Make a donation
Visit our online giving pages, where you can make a donation to the James Ferguson Fund.
Factfile (compiled by James)
Why is it called Leber’s Hereditary Optic Neuropathy?
This condition was first described in 1871 by the German ophthalmologist Theodore Leber and it was subsequently named after him. Passed down from parents to their offspring, Leber’s Hereditary Optic Neuropathy refers to a problem with the optic nerve. The optic nerve is the specialised, high-speed cable which channels information from the eye (camera) to the vision centres in the brain.
A note of caution here, Theodore Leber was also the first ophthalmologist to report two other eye conditions: Leber’s congenital amaurosis and Leber’s miliary aneurysms. In order to avoid any confusion, it is therefore best not to use the term Leber’s disease. The abbreviation used most frequently by eye specialists for Leber Hereditary Optic Neuropathy is LHON.
How common is LHON?
There are about 1 in 14,000 affected individuals in the UK.
How do you get LHON?
It is a genetic condition caused by a ’spelling mistake‘ in your mitochondrial DNA and the three most common spelling mistakes, which account for 95 per cent of all cases, are know by their numbers: 3460, 11778 and 14484.
An important point is that only females can pass the spelling mistake to their children, males do not. If you inherit the spelling mistake from your mother, you have a 50 per cent chance of losing vision if you are male and a 10 per cent chance if you are female. Male carriers are therefore at a much higher risk of being affected, and the reason for this marked gender bias is still unclear.
The peak age of onset in LHON is between the age of 15–30 years and 95 per cent of carriers who will experience visual loss will do so before the age of 50 years.
About 40 per cent of people affected with LHON do not have any clear family history of the condition.
What happens when you become affected?
Both eyes are affected in the vast majority of LHON cases. In 25 per cent of patients, both eyes are affected right from the start whereas in the remaining 75 per cent, the other eye becomes affected within a period of 6–8 weeks. There is no eye pain but it is quite an alarming experience as things can happen very quickly. You become aware that your central vision gets gradually more blurred leaving you with only peripheral vision. This means that you are still able to navigate around but you cannot focus on anything straight ahead or see fine details. In my experience, if you were to stand at a table and stare at a newspaper that would just be a grey blur but everything else in your vision would be clear.
Will my vision get any better?
Work supported by this fund has enabled the ground-breaking research team to publish findings (26 July 2011) showing that treatment with idebenone for people with LHON can improve vision and colour perception. You can find more information in a recent press release from Newcastle University.
In rare cases some patients do experience a dramatic recovery to near normal. This is more likely to happen if you have the 14484 LHON ‘spelling mistake’. However, it is important to realise that you will not go completely blind and your peripheral vision will allow you lead an independent life. Help is also available from social services and your local ophthalmologist who can arrange assessment in a low visual aid (LVA) clinic and registration as visually impaired.
Additional information
This information is from my own personal experience and additional resources are available on-line at the Newcastle LHON website.
What does the sight loss prevent me seeing or doing?
- Seeing peoples faces i.e. not knowing what their expression is or if they have any marks. Someone could have a black eye and I would have no idea. I recognise people off their voice or circumstance i.e. at work I know who should be where in the building
- Reading anything: Newspapers, books, letters, watches etc
- Watching television
- Going to football matches
- Being able to count coins. I now have to feel the shape
- Being able to drive, ride a bike on my own
- Knowing when it is safe to cross the road. I now have to feel under the signal box for a spinning cone
- See my nails to cut them. I have to feel where they are and then cut.
To make a donation to the James Ferguson fund, please visit our online giving pages.