At the end of last year I set myself a number of personal running challenges starting with achieving a Half Marathon PB going under 1 hour 35 minutes which I achieved in May this year. Throughout my training I discovered a continued passion for running, for my own personal benefit but also sharing that with others which is a mindset shared by my coach Andy McGhee (pictured) who has vowed to help me reach my ultimate target of running a 100 mile race. This then led to asking the question, how can I do this and help others/raise awareness for a good cause... thats where AMFA and HDA comes in!

My goal is to use a series of challenge that I have set myself over the course of the next 12 months to raise funds and awareness for the charity as well as share my personal training story, and all it's challenges, along the way.

Sub 1 hour 35 half marathon (May 29th 2023 - Hackney Half)  - ✅

55 km 5 Valleys Ultra (30th September 2023) - ✅ 6 hr 59 min 28th place!

South Downs Way 50 Mile (13th April 2023) - ⏳

2024 London Marathon (21st April 2024) - ⏳

100 miler! - TBC

We selected HDA or a number of reasons, not only limited to the fact they are a small charity that is noticeably overlooked by larger/mainstream causes but also because one of our very own is, and has been, affected directly by the disease. Please take some time to read Lisa Pearson’s very sincere story which highlights the importance of our commitment to HDA this year:

Seven years ago, I was made aware that my mother had been diagnosed with Huntington’s disease. This was a total bolt out of the blue for me, my husband Scott and our (then) one-year son. The first thing you do when you are told that you may have inherited a genetic disease (the chances of inheriting the gene are 50/50) is to Google it.

Upon my first google hit, I was met with sentences like…. ‘usually fatal after 20 years’, ‘no known cure’ , ‘progressive disease that usually results in movement, thinking and psychiatric disorders. Obviously, not what you want to be looking up after you just popped round to the parents for a Sunday lunch.

Huntington’s disease is caused by a faulty gene, that results in parts of the brain becoming gradually damaged over time. It was explained to me, that it is like having dementia, Alzheimer’s and Parkinson’s at all once, 20 years earlier then you usually suffer one of these.

Panicking, shortly afterwards I contacted the Huntington’s Disease Association (HDA) as they had been supporting my mum and dad through the diagnosis. Eve, the HDA adviser for Hampshire came round to visit mine and my sister’s family on several occasions, in the evening and at weekends answering the pages and pages of questions we had and supporting us emotionally as a family.

Fast forward a few years, I decided to undergo the genetic testing process, my results came back positive for Huntington’s disease, whilst I was unexpectedly pregnant with my second son. My elder sisters result was negative. I am unable to test my sons until at least 18. This age range is implemented, as there is a very high suicide rate after diagnosis.

I became more involved with the HDA four years ago, when attending a pre-symptomatic seminar, I realised many of the questions in the room were regarding finances. It struck me, that in this time when diagnoses came out of the blue, the one part that people can feel they can plan for is there financial future. I knew the answers to most of the questions, due to my background and the research I had carried out myself during the genetic testing process.

I would say I am contacted on average 5 times a week by referrals by the HDA.

I am very proud to work alongside the HDA, and personally have benefitted first hand from their support.

There are currently 8,000 who are suffering from Huntington’s disease, and 32,000 who are at risk. When I contacted my family doctor to request the genetic test, he said in 40 years of practice we were only the second family he had across with HD.

All charities are for a good cause, but I would love to highlight the HDA as they are a small charity, often overlooked by larger charities, whose work is just as vital.