Our dad donated his brain to MS research
When 71-year-old Howard died on New Year’s Day 2025, his daughters Hannah and Charlotte had 48 hours to fulfil his last wish - to donate his brain to MS research.
The sisters tell us how MS impacted their family, of Howard’s determination to make things better for others, and how his brain might fuel new discoveries.
MS has affected all of us
Charlotte: Dad was diagnosed with primary progressive MS in 1997 when he was 44-years-old. He had quite a collection of other health conditions too. And not only did Dad have MS, but our mum does too. She has relapsing remitting MS. We haven’t known her without it. They separated before Dad was diagnosed.
Dad’s MS started with him falling over a couple of times and being a bit clumsy. A few years later, I got married and he walked me down the aisle using his walking stick. That was pretty much the last day he was able to walk that far. After that he had a slow decline in his mobility, until he was using an electric wheelchair full time.
He’d been such a fit and active man. He’d always say: ‘I'm a big, strong boy from South London!’ He couldn't get his head around the fact that his body was failing him. For many years he used a chair, and I forgot how tall he was.
Charlotte: Later in life he needed help with eating and was doubly incontinent. He was registered blind, which we know is rare for people with MS. It was important that we enabled him to do as much as he possibly could, but by the end he wasn't safe when he was out and about. In August 2024 we all made the tough decision for Dad to move to a nursing home.
Hannah: I just expected Dad to be strong and live forever…which I know never happens. But he had such a strong mentality and he never complained or gave up. He wanted to live for his ‘three score years and ten’ [70 years]. Which he did.
Dad was a proper character
It was never dull with Dad. He would say hello to everyone he met. Wherever he went, he left his mark in some way or another.
Charlotte: When we were younger, he used to take us on these incredible day trips. He was always trying to teach us how things worked. So we’d go everywhere from the Natural History Museum to a nuclear power plant! He always wanted to broaden our horizons, ask questions and find out how the world works.
There were so many things that he wanted to achieve still. His brain was very active. In his mind he could do things, but physically he couldn't.
Hannah: Music was a big part of his life. He had two outfits planned for after his death: one for his funeral, and one for when his brain was donated – he wore his Jimi Hendrix t-shirt for that. He was a massive fan.
Pledging to donate his brain and spinal cord
Charlotte: In 2006 he sat us down and asked us if we’d be happy for him to pledge his brain and spinal cord to the MS Society Tissue Bank after he died. He was passionate about the difference it could make to others.
Hannah Dad did a lot of research about MS, he’d read about new treatments, anything that could help. Towards the end it was so important to him that everything was in place to make sure his brain was donated to help research.
Then he died on New Year's Day 2025, which was a public holiday… Typical dad!
Charlotte: There was just 48 hours to donate Dad’s brain after he died. When I rang their emergency line, Rory from the Tissue Bank rang me back straight away. He made the process so easy. This really helped when we’d just lost our dad and were dealing with grief. We didn’t want to let Dad down.
Rory took the pressure away, and said ‘leave it to me now’. Donating Dad’s brain was seamless.
Hannah: When I heard the donation had been successful, I cried. It was like: mission accomplished, Dad’s wishes had been fulfilled.
Our visit to the MS Society Tissue Bank
Hannah: We wanted to see where Dad’s brain had gone, so we visited the MS Society Tissue Bank at Imperial College, London. We met Rory, and were able to thank him in person. He gave us a tour of the labs and we saw how everything is processed. Everything is done with dignity and respect – he even calls Dad ‘Howard’.
It’s incredible how long the tissue is kept and could help discover new things. We learnt that brain samples from the tissue bank helped lead to a discovery that made ocrelizumab, an MS treatment, which is amazing.
Charlotte: Sometimes with charities you can wonder: where is the money actually going? Today’s visit, finding out what has been achieved with people’s donations, was like proof in the pudding for me.
It gives hope that with the money raised, advancements are happening all the time in research.
We want Dad’s story to touch people’s lives
Charlotte: Stopping MS would mean everything to us. It's a horrible, horrible condition. It was the most heart wrenching thing watching Dad change so dramatically. If telling his story helps in any way it will be so worthwhile.
Hannah: I want to show people that actually we can all do something. Dad donated his brain, so I say to people: maybe you can give a bit of money!
Charlotte: There weren’t any disease modifying therapies for Dad. But it could be different for people like him in the future. There’s already been so much change for relapsing remitting MS, and in five years things could be completely different. Our hope is that no family should go through what we've gone through. It's not just about us. It's about everyone affected by MS.
When Dad filled out his form to pledge to donate his brain, he wrote that he wanted to “improve the lot of others”. That sums up Dad.
In those moments when we're missing him a lot, we know that his brain is still out there, helping researchers find new and wonderful things to help other people with MS.
Charlotte: We’re very, very proud of him.
Vital research and resources like our Tissue Bank could hold the key to stopping MS for good.
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If you’ve been impacted by any of the issues in this blog our free MS Helpline gives emotional support and information to everyone affected by MS. Call 0808 800 8000 or click here to find out more.
Howard's story
Hear more from Hannah and Charlotte, and their dad Howard, in the video below.
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