Juliette Hughes

Juliette & Rob's AKU half marathon

Fundraising for The Alkaptonuria Society
raised of £500 target
Donations cannot currently be made to this page
Event: Saucony Cambridge Half Marathon 2020, on 8 March 2020
Participants: Robert Poole-Mckenzie
The Alkaptonuria Society

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RCN 1101052
We provide crucial information and support to patients living with Black Bone Disease


We are taking on the challenge of running the Cambridge half marathon to raise money for the Alkaptonuria Society, who are an amazing, hardworking charity that support a small group of patients living with an extremely rare genetic disease called alkaptonuria (AKU). AKU patients cannot break down a chemical called homogentisic acid leading to black and brittle bones and cartilage, that causes early-onset osteoarthritis, and also other health complications.

The Alkaptonuria Society help AKU patients with many aspects of their disease. Not only do they provide accurate and reliable information about AKU, they also run annual patient workshops and offer individual home support visits, creating a supportive community that ensures that the patients and their families are not isolated by their rare condition and can meet others who understand how they feel. The AKU society also provides ongoing support from a dedicated team at the National Alkaptonuria Centre in Liverpool, where patients attend an annual clinic.

Not only do the Alkaptonuria Society support AKU patients and their families, they also fund vital medical research that aims to understand the condition further and ultimately find a cure. Juliette has spent the last 3 years carrying out research into this ultra-rare genetic disease for her PhD. Only 1 in every 250,000 people inherit this condition, with just under 100 patients in the UK, and it has been a privilege to be able to study a disease as rare as AKU. Knowing how the disease affects the lives of AKU patients, some of whom Juliette has met at a patient workshop, will drive us to train harder and raise more money for the AKU Society which has transformed the lives of people living with AKU. 

To find out more about AKU and all of the amazing work carried out by the Alkaptonuria Society, visit the AKU society website: https://www.akusociety.org/index-what-is-aku.html 

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About the charity

The Alkaptonuria Society

Verified by JustGiving

RCN 1101052
Transforming the lives of alkaptonuria (AKU) patients and their families, through patient support, community building and medical research. Help us cure the first genetic disease ever discovered by donating today.

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Total raised
+ £173.75 Gift Aid
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