Stuart's page

Stuart Boyne is raising money for PACS1 Research UK
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Royal Parks Foundation Half Marathon 2017 · 8 October 2017 ·

PACS1 Syndrome is a very rare genetic condition caused by mutation of the PACS1 gene. There are just 100 cases that have been identified worldwide. Diagnosis is typically done using full genome or exome sequencing. Both methods are expensive and not easily available. There are likely many more cases out there, that will eventually be reported as people learn about the condition, and testing becomes more affordable and available. Our charity is trying to raise awareness of PACS1 and contribute to further research and support of people with this condition.

Story

Thanks for taking the time to visit my JustGiving page.  I have stupidly decided to run the Royal Parks Half Marathon with only 1 weeks notice  because it is a great opportunity to raise money for this great charity that is raising awareness and money for PACS1, a rare disorder that currently has no single cure.  I became aware of PACS1 earlier this year as I was introduced to someone whose daughter is a sufferer.  She is an inspiring young lady and any research funds will go a long way to helping both her, the other 59 known sufferers worldwide and their families in the challenging years ahead.  More information can be found at PACS1families.wordpress.com 

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Donation summary

Total
£225.00
+ £56.25 Gift Aid
Online
£225.00
Offline
£0.00

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