Amanda Vine

Labrune Syndrome Research - Raising awareness and fundraising campaign

Fundraising for The University of Edinburgh
raised of £40,000 target
by 626 supporters
We help you raise money and awareness to support the cause you care about most.


As some of you will know, a few years ago, aged 12, Matthew was diagnosed with the devastating condition, LCC (Leukoencephalopathy, Calcification and Cysts) also known as Labrune Syndrome, a hugely rare degenerative genetic condition which as well as causing an array of neurological symptoms in patients (including seizures, progressive loss of speech, function and mobility) from time to time throws up life threatening cysts on the brain. Over the last few years, he has undergone numerous operations to drain cysts on his brain which keep reforming. Little is understood about the progression of the disease, there being only approx 60 known cases globally. However, thanks to the work of a small team of scientists at Edinburgh Uni led by Prof Yanick Crow, the leading expert in the disease, research is progressing to understand the disease and hopefully find treatments (for which there are currently none) to stabilise the condition and improve quality of life for patients, many of whom are diagnosed as young children. Matthew is only the second Labrunes patient to trial a drug, widely used for treating cancers,  which they hope will shrink the cysts in his brain in the same way it would a cancerous tumour. Of course, there are no guarantees, but we have everything crossed that this may bring him a prolonged period of stability.🤞🤞His progress will be closely followed by Yanick and his team.

We are incredibly grateful to the fantastic team of neurosurgeons, Doctors, nurses and staff at St George's who have looked after us these last rollercoaster few years and will continue to do so during his treatment.

As a parent facing this, the feeling of 'helplessness' can at times be overwhelming. Those of you who know me well will know that I can't sit still for long, so in an effort to 'do' something, I am embarking on various fund-raising challenges and events to support the ongoing research effort as well as raising awareness of this devastating disease and its impact on the lives of patients and their families.  All the money raised will go directly to Prof Crow's team for the advancement of Labrune's research. PLEASE contribute if you can, or show your support by joining me on one of my runs or fundraising events.  No donation too small! 🙏 If you are able to support us by running your own Labrunes event or fundraiser, I would love to hear from you also.
Many thanks for reading. Please feel free to share.  Mandy  ☺️xx

The University of Edinburgh is a registered charity whose impact and reach extends far beyond the education of the student body.With expertise in medicine, the sciences and humanities, and centres investigating everything from major brain disorders to inclusion and diversity; the University can be an effective and powerful force for advancement and change with a truly global reach.Like all charities we rely on donations and are extremely grateful to our fundraisers who have baked, cycled, hiked, swam, climbed & more to help our vital work.

About the charity

You can choose from a variety of Edinburgh projects to Fundraise Your Way for. All the money you raise is processed through the University of Edinburgh Development Trust (reg charity SC004307) ensuring 100% received goes directly to the cause you care about and put to use straight away. Thank You.

Donation summary

Total raised
+ £4,069.38 Gift Aid
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Offline donations

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