Inspirational brothers George and Scott have been pushing themselves to the limit by taking on a range of fundraising challenges.

Their dad was unfortunately misdiagnosed with Alzheimer's disease before they finally found out that he had Huntington’s disease. The brothers agreed that whatever their own outcome, they would support the Huntington’s Disease Association.

Tell us a little about you and your background

"Scott and I are brothers. There is a five and a half year age gap between us but our interests are mainly the same which is football, music, going to gigs, walking and running. We have always looked to raise money in the past for charities close to our heart by doing the stuff we enjoy but at the same time pushing our physical limits. We started small by doing the Manchester 10k run in 2013 for breast cancer in honour of our late grandma, who at the time was battling this disease. After she died, we continued for many years to complete runs in her honour and for this charity. 

 

In 2018 we completed the national three peaks challenge which is Ben Nevis, Scafell Pike and Snowdon. We ascended the three highest mountains in Scotland, England and Wales in under 24 hours (including driving) for Mind UK. 

 

When we first learned that our dad had Alzheimer’s disease we wanted to help in our own way. We planned to complete 12 challenges in 2020 - one challenge every month. We completed the first one in January 2020 which was a half marathon in under two hours – an amazing achievement for me personally as I had never run more than 10k in a timed event. Unfortunately, the rest of the challenges were postponed due to the covid-19 pandemic. A matter of months later we learned that our dad had been misdiagnosed and he in fact had Huntington’s disease. We decided that when everything returned back to normal the Huntington’s Disease Association was the charity that we would raise money for."

What were your dad's initial symptoms like and how did you feel about his misdiagnosis?

"I suppose it all started around six or seven years ago when we went on a family holiday to Las Vegas for my brother’s 30th birthday. Our dad had been made redundant from his job of over 30 years and he started to show signs of forgetfulness and was having issues with his balance. At the time we put this down to age and the stress of trying to find another permanent job. As the years went by, these symptoms grew stronger and more consistent and there were more rapid changes and mood swings. Around three years ago, I received a phone call from my mum to say my dad was dressed in his work suit knocking on neighbours’ doors asking where his next work meeting was. Bear in mind my dad hadn’t done this job or worked permanently for around eight years at this point. 

 

Again, we felt that this could have been some sort of mid-life crisis caused by stress, which had resulted in a strong event of psychosis. Over the next few months, our dad spent time away in a psychiatric care unit and Salford Royal Hospital in Manchester. After several tests the doctors concluded that he had Alzheimer’s. 

 

Over time we came to terms with this news and what it meant for our dad. To our surprise, the final tests came back to show that he did not have Alzheimer's as a certain section at the back of his brain had not changed as expected. Doctors then started to investigate our family history and through distant cousins we found that one of our grandparents (on our dad’s side) brothers potentially had died from Huntington’s disease. It was agreed to carry out the relevant test on our dad to confirm, and this came back positive. 

 

This then raised the question, do we have Huntington’s? What about our children? It was the first time we became slightly selfish in nature, battling the covid lockdowns and unable to start our counselling/testing journey for almost a year down the line."    

Had you heard of Huntington’s disease before your dad was diagnosed?

"In name yes but nothing more. It wasn’t something that we had heard much about unlike Dementia and Alzheimer’s. This was one of the reasons we agreed that whatever our results, we would help to raise as much awareness and money for Huntington’s disease as we could."

How did getting tested and getting your result change your life?

"I suppose it has made us appreciate the little things in life more as silly as that sounds. To battle lockdown alongside the news our dad had this disease without being able to get tested until early 2021 gave us many months to reflect and re-prioritise our lives. It became clear that you never truly know what is around the corner. We wanted to make sure we were spending our most precious time doing the things that made us and our family happy and to be thankful for the children that we already had. We made an agreement that whatever our result, we would never forget this life experience for the good and bad as in the end, it has very much helped improve our outlook for the better. 

 

After the testing process, we both received a negative result for Huntington’s which in itself is something truly amazing. Of course, we were both overjoyed and relieved but the most special thing for ourselves was the fact we knew both of our children were also safe and they could live their lives worry-free. One of the hardest things to come to terms with was not knowing if they would in turn have the disease and where that leaves us when planning any future children."

Please tell us about the amazing fundraising challenges that you and your brother are taking on

"We originally planned to complete 12 challenges in 2020. During lockdown and the diagnosis of our dad, we decided to raise money for this great charity instead. It looked like it would be June 2021 when government guidelines would allow us to kick start our challenges once again. As some challenges were rescheduled and we had already signed up to raise funds for Alzheimer’s society, we made sure that we honoured this. It therefore worked out that we would do 13 challenges over a 15 month period.  

 

We wanted to push our abilities across the board in running, walking and cycling over the remaining 12 challenges which would be in support of the Huntington’s Disease Association. The events would consist of two half marathons, a marathon, a Manchester to Blackpool bike ride and multiple walking challenges which would build us up to the final one where we would be looking to complete a 56-mile walk (90k) in under 24 hours across the Peak District. In total, by the end, we will have cycled 60 miles (97k), run 75 miles (121k) and walked 190 miles (305k) throughout all our challenges with much more added to this throughout our training schedule!"

Can you tell us about the challenges that you have completed so far?

"So far, we have completed five challenges which include a skydive, a Total Warrior 12.5km event, a half marathon, a marathon and a 35-mile walk along the Gritstone Trail. Personally, I found the skydive the most enjoyable so far. Mainly because it helped me overcome a fear of heights and experience something truly amazing and out of this world. 

 

One of the toughest both physically and mentally for me was the Brighton Marathon. I enjoyed the first half of the marathon as crazy as that sounds and was on course to get a time of 4 hours and 15 minutes. Then came the real hard work around the 16-mile mark, I hit the so-called ‘wall’. My Hamstring felt tight, and everything hurt after which made completing the race quite a struggle. I finished the marathon in a time of 4 hours 52 minutes and Scott in 4 hours 12 minutes." 

You have 8 of the 13 challenges left to complete. Do you feel ready? Which ones are you most nervous for?

"Three of the remaining challenges really stick out for us. The 60-mile bike ride, the 62 miles (100k) Jurassic Coast walk over two days and the 56-mile (90k) walk under 24 hours. These will continue to push our limits and our determination. The crazy thing for me is that we have to complete the 90k walking challenge in one full day without stopping or sleeping – something which blows our minds." 

Thank you so much to George and Scott for sharing their story with us. You can visit and donate towards their fundraiser on their JustGiving page.

If this has inspired you to take on your own fundraising challenge, you can find out what fundraising events we are running. If you have your own challenge in mind make sure you register your fundraiser with us.

If you are affected by Huntington’s disease and are in need of support or advice on testing, please contact us on 0151 331 5444 or email info@hda.org.uk. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with Specialist Advisers waiting at the other end to offer you support. 

If you have a story to share, please get in touch with us via email at comms@hda.org.uk.