Welcome to my TCS London Marathon #TeamHDA fundraising page.

I pledged in January 2025 when I couldn't run/walk 1 minute without getting out of breath, to run a Marathon in 2026 for the Huntington's Disease Association. In April 2026, I will be running the London Marathon as part of #TeamHDA.

Who are the Huntington's Disease Association?

The Huntington's Disease Association (HDA) have been the most incredible source of support to several generations of our family. They have always been there with answers, or advice where to find the answers, with both the small and big questions HD throws up. They manage to balance supporting the individual with driving forward advances in research into this disease for which there is currently no cure or treatment, whilst never losing sight of the person. Without the incredible support of our local Specialist Huntington's Disease Adviser, Poppy, I don't know where we would be. She has been utterly, utterly amazing. The work which the advisors do is so incredibly important to HD families.

You may have seen the recent news about a breakthrough in the treatment. This was a very, very small trial and whilst it is the most amazing news, we are in no doubt that there is still a lot of work to be done if this trial is ever to become a treatment, and the treatment accessible. Now there is even more reason to keep advocating and flying the Huntington's Disease Flag.

The Huntington's Disease Association supports anyone who is affected by Huntington's disease across England and Wales. They pursue the best possible care; provide training & advice to families and professionals; raise awareness, and promote research towards better treatment and care.

Why am I running for the HDA?

Not many people have heard of the Huntington's Disease or the Huntington's Disease Association and, if nothing else, I hope to raise awareness of the work they do. The London Marathon 26 Fundraising will be focusing on raising money to support 3 invaluable aspects of their work: their helpline, their advisors and their Youth Support work (as a teacher this last one is particularly close to my heart).

It's personal too ...

Without the HDA life would be very different for our family. It's not just about getting the right equipment to be able to live independently at home that little bit longer, being able to make yourself a cup of coffee, or be able to wash your own hair. It's the really, really big stuff too. Navigating CHC, long and repeated hospital admissions… We wouldn't have found the fabulous Care Home, which understands HD for my Mum without lots of failed placements. My grandma wouldn't have had the right equipment, particularly her chair, which she spent so much of her day in, in her Care Home which had never heard of HD before Grandma. I wouldn't have been able to participate in research to help understanding around aspects of HD. Living in a family with Huntington's I want to raise awareness and make a difference.

The challenges of HD are huge; it is an incredibly cruel disease, and without the HDA, they would feel insurmountable. It is really important to me that I give something back... so, I am running or hobbling (there'll definitely be walking) the London Marathon 2026. The trainers have been on. The plan is being followed and I will show my appreciation to this fantastic charity even if I am the last one to cross the finish line. I am also keen to show that with the support of the HDA, life in an HD family can absolutely still be lived to the full and you can achieve whatever you want to (even running Marathons).

As a non-athletic, overweight, 40-something, this is going to take mental and physical strength. Every £1 I raise will help get me around. So please dig deep and support the HDA and all the work they do. This isn't going to be a walk in the park at all.

Who am I running for?

The JustGiving Page asked if I was running in memory of anyone; I answered no. In truth, I am running in memory of my Grandma Betty and everyone else who has been, or currently still is, affected by HD. My Mum, who is now battling the last fight and has shown such strength and determination, over the last decade. My brother and his wife, and their losses.

If you have taken the time to read this far - thank you.

Sarah x

P.S. Please don't feel that you need to tip justgiving when making a donation. You can enter £0 into the custom amount on the donation summary screen. You will need to scroll down a bit below the slider to see this option.