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Lauren's fundraiser for LHON Society

Lauren Cartwright is raising money for LHON Society
In memory of Uncle Will

IOW Loop · 24 October 2026

We are a patient-led support group for a rare condition called Leber's Hereditary Optic Neuropathy (LHON). Our group is comprised of LHON patients, family members and medical professionals. Our aims To provide support and information to those impacted by LHON; patients, their family, friends and healthcare providers. Provide guidance and representation on issues that affect the LHON community. Promote up-to-date knowledge and understanding of LHON in the welfare, medical and scientific communities. Facilitate research into understanding and seeking ways of preventing and ultimately reversing sight loss in LHON-affected people.

Story

In June my lovely Uncle Will passed away unexpectedly. A good egg, quick witted and very funny chap who is very much missed by my family. Seeing all of the wonderful people at his funeral who have supported him over the years was a very beautiful sight and a testimony to Will.

When Uncle Will was in his 30s he very rapidly lost his eye sight. First in one eye and then the other until he only had tiny pin pricks of light for peripheral vision. This happened within weeks.

The cause of this was found to be Leber's Hereditary Optic Neuropathy (LHON), which is a hereditary mitochondrial disease that affects cells in the retina and the the optic nerve. These cells are called retinal ganglion cells. Damage to these cells causes loss of vision. This disease is passed down from mothers to their children, mostly affecting male descendants though women can be affected too.

Will had to learn to live without his eye sight and adapt to navigating the world around him, which he did very stoically. We both quite liked a pizza and I remember us finding a way in the pizza express in Canterbury to roll the pizza slice up so he could eat it more easily!

In October my fiancé Hugo and I will be cycling a loop of the Isle of Wight in one day to raise money for the LHON Society. For those of you who have known me for a while you will know that cycling is not a life long passion of mine and something I have got into relatively recently. This is going to be a challenge! This charity supports families who are impacted and carry this disease as well as supporting the funding of research into the condition so that treatments can be found to delay or prevent the sight loss. We will be cycling in Uncle Will's memory. I am very proud to be his niece and I hope that by doing this challenge we can raise some money to fund support and research for LHON in his memory.

Donation summary

Total
£1,085.00
Online
£1,085.00
Offline
£0.00

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