Story
Having run two marathons before (Paris and Nice-Cannes) it seemed a good way to raise money for the HDA, who are providing valuable support to my family afflicted by the disease. Early training, as on the Strava feeds, make me question the wisdom of this idea at 67 years of age.
French marathons have not got the charity bug like London so London it is. Georgia is hosting this fundraising site as the UK resident and tax payer.
David Leigh, my brother in law, was diagnosed in January 2021, and Fiona's diagnosis followed in April '21.
Our children, Georgia and Frederic, have therefore a 50% chance of inheriting it from Fiona. Luckily her older brother Robin is clear saving his children and grandchildren from any risk.
Both Fiona and David have early symptoms; this has meant stopping work (the Chambres d'hôte for Fiona).Fiona is being followed up by our local specialist centre at CHU Lille, and has started on a development drug trial Branaplam Vibrant-HD in May 2022. She benefits greatly from talking as needed to an HDA counsellor in the North West of England.
David and Georgia are covered by the UK centre in Birmingham, with Freddie by Exeter. David is also participating in a different development drug trial there so let's hope one of them succeeds.