Base

I have a long & varied career inc: pioneering FairTrade in UK, Civil Servant setting up the UK cattle registration and tracing system after BSE, CEO of a care charity, project manager on various schemes, and chair of my Parish Council, running a folk festival, playing various musical instruments in a folk band. And like many with ALS, activities included sea kayaking, rock & ice climbing, running, cycling, mountain climbing, generally physically and mentally challenging pasttimes.

Married for 34 years to a wonderful woman with two adult sons.

Now to ALS, which does not & will not define me. First symptoms foot drop March 2019, confirmed diagnosis with C9orf72 familial ALS 3/3/20. I spent my teenage years nursing my mother through MND/ALS until she died aged 49. Her mother and elder sister had dementia, probably FTD, as does her sister’s son, my cousin. I’m busy researching Mum’s family history to see when & where it began. My younger son, 29, knows he carries the c9 mutation. My elder sister, a doctor, will bot get tested ????.

I start dosing with FOCUS C-9 in the Wave WVE-004 Clinical Trial on 11 October. Phase 1 runs for 12 weeks, then depending on success phase 2 runs for 24 weeks.