Sarah Winckless is a former British rower, Bronze Olympic Medallist and the first woman to umpire the men’s Boat Race. Winckless is now a Leadership and Performance Coach as well as a Patron of the Scottish Huntington’s Association. Winckless has family history of Huntington’s disease and tested positive for the variant herself while at university. Since then, Winckless has become an active campaigner and advocate for Huntington’s disease, encouraging other families to speak openly about the condition and receive the right support.
Please note the transcript has been edited for brevity and clarity.
FLG: Hello, everyone, and hello Sarah, thank you so much for joining me today for the latest Patient Perspectives as we take a look at the impact that genomics is having within patient lives. Today, we are joined by former British rower, Sarah Winckless. So, Sarah, if you could just introduce yourself and tell us a little bit about what you do.
Sarah: Yes, hello, now I work in leadership and coaching, but a long time ago now (it feels) I went to my last Olympics in 2009. So, I was lucky enough to represent Great Britain as part of Team GB in Sydney, Athens and Beijing. Since then, I’ve used my team skills, my development skills and my interest in psychology to help mostly corporate athletes work at their best. I’ve also been Chef de Mission for Team England for the Commonwealth Games. So, I’ve taken some of my knowledge and looked at how to create the platform of performance for other athletes. It’s been great fun, actually loads of variety!
FLG: You are a former British rower and the first woman to umpire the men’s boat race. Why boats? What has been your drive?
Sarah: Yeah, Shannon, it’s really interesting because we’re meeting on Zoom, and we’re not standing side by side. If we were standing by side by side, you would realise I’m over 6ft. So, I am a giant! I am about 6 foot 2. As I was growing up, I was the second child, so I had a big brother to compete against. He was only 14 months older than me. My dad was a rower, and very good at athletics and all sorts of things. My mum had been a dancer, so she followed dancing. And so, I grew up into this active family who encouraged me to be active. As a teenager, I kept away from the water; I didn’t want to do what my dad and, actually, later my stepdad did. I wanted to forge my own path. So, I played netball, basketball, did athletics, and then I was lucky enough to get a place at Cambridge and that led me onto the water. I was offered a place in my college’s rowing boat team, and at the time, I’d just not qualified for the Commonwealth Games as a discus thrower (so my track and field). And I was home for the summer, and it gave me something different to do. And I got myself in the boat, was absolutely rubbish, could not do it all! But every now and again, something went right. And that something that went right made me think I’ll just go back and try again, I’ll just go back and try again. And pretty quickly, I got more right than wrong, or started to get better at it. And I got addicted!
FLG: You now work in leadership and coaching – what made you go into that?
Sarah: I think I learned so much as an individual contributor. So as an elite athlete, I was incredibly lucky. I started my elite sport in ‘97, and lottery funding had just come on board. So, as I went up the ranks, the system became more advanced; it became more developed. And I was surrounded by some world-class people who were supporting me to be at my best. And I learned loads and I wanted to be able to share that knowledge. And if I had become a coach, if I worked with one crew, of course, you can only make so much difference in that way. So, I wondered if I could do some work for Team GB and make a difference to lots of athletes or the Commonwealth Games. So, it was about how could I quickly – because we’re going to get onto why I am a patient – make changes and learn lots. So, I created a portfolio. I was in my mid-30s, and I wanted to basically find out where I was good in this new life and grow it and find out where I didn’t fit and shrink it. So, I just said yes to lots and lots of things. And I have these three buckets – was I earning, learning, or making a difference. I probably shouldn’t say them in that order. I think in year one and two, I did an awful lot of learning. I think we all do. I was doing things for the first time, lots of the time. I was doing a lot of making a difference, I was very lucky to get lots of volunteer roles and be able to make a difference to some of the things I’m passionate about. And every now and again, I would look up and think, ‘Oh, my God, I really need to earn something because I have to pay the bills!’
FLG: Your family are affected by Huntington’s disease – for those who don’t know, would you be able to explain what it is?
Sarah: Yeah, Huntington’s disease is a brain degenerative disease. At the moment, I have the gene, I am asymptomatic, but it affects your mood, memory and movement. So basically, I, as a teenager, watched my mum change. So that beautiful dancer that had this amazing vibration about life. She was an extraordinary role model for me as a very young girl. She got a lot more moody. And in fact, I think she was probably depressed. Her movement changed because she was affected by Huntington’s in that way. And actually, for us, her memory was pretty good. It just took her a really long time to do things because there was a hole developing in her brain.
FLG: When did you first became aware that your mum was affected by the disease? And did you have any other family history of Huntington’s?
Sarah: So, I became aware mum was different in those teenage years, but we had no language. Her doctor started to want to look down a path to see what was going on, but mum changed doctor. She did other things to try and keep herself well. So, I think she knew she wasn’t well. So, she got her mercury fillings taken out and had amalgam put in because she was talking about mercury poisoning her brain. And actually, she stepped away from conventional medicine and became much more holistic and homoeopathic in a search for staying well. So, I knew she was different, but I didn’t really know she was ill. And it wasn’t until I was doing my degree really and I was doing experiments in psychology, and we were looking at the brain essentially. And, you know, back in the day, there would be a patient with brain damage, and you’d see a change in behaviour and the neuroscientist of the day would be looking at the behaviour and then sadly waiting until the patient died to, as I’m sure we all know, cut it up and then find out where the holes in the brain were, or where the brain damage was. And I was listening to these lectures at a level that was just horrific. I mean, one, it was fascinating. I was absolutely fascinated by the brain. But I was also mapping these spaces onto the things my mum could no longer do. And it was pretty clear that there was something wrong with her brain. It wasn’t that she was just different; there was something going on there.
And it was at the end of that first year at university where we heard the word Huntington’s for the first time. Maybe I didn’t hear the word Huntington’s for first time because, like so many families, I think I had heard it before. I think I heard it behind closed doors. There was this familiar echo when I started to hear it. And when I look at photos of my grandfather, my mum’s dad, he was ill with Huntington’s; you can see it. Because if you know the disease and how people move, how they hold themselves, you can see that was there in my granddad. And so, what I suspect was it was a hidden disease in my family, whether mum knew or not. And bizarrely, she worked for Max Perutz, who is the guy who discovered the gene for Huntington’s, in her early career before she stopped working to have children. So, it certainly was a disease that my family was dancing around. She was dancing around, before we understood that she had it. And for me, when I learned she had it, it was like the scales coming off my eyes. Knowledge was potential power for me. And I was able to understand more about the disease, I was able to understand what the risk was for me and my three siblings, because it’s genetically inherited, 50-50 chance. But also, I was able to repair my relationship with my mother, because that relationship through those teenage years had become quite difficult, quite fragmented, definitely very spiky and sparky. And I was able to separate my mum and the disease and be able to walk alongside with her. For me, it was really repairing.
FLG: What made you want to get tested?
Sarah: I think it’s our line, isn’t it? Knowledge is potential power. I was pretty young – I was in my early 20s, my first year of university. And I was at Cambridge and the Brain Repair Centre was just down the road. And I thought, well, why not? For me, at the time and now actually, being positive (as in having the gene) felt no worse than being at risk. And I thought by genetic testing, I can know where I am with it and knowledge was potential power and it allowed me to make choices. So, I waited the six months that I needed to, I went through the genetic counselling with the wonderful Ann Kershaw, who was my genetic counsellor at the time at Cambridge Addenbrooke’s. I went through that process, and it was a really, really positive process. I was ready to hear the results. And of course, when I sat in that face to face that meeting, it was an incredibly difficult conversation because Ann was having to give me the news that I didn’t want to hear, I don’t think anyone wants to hear that you do have the gene; you want to hear that you haven’t.
FLG: How did you juggle receiving that diagnosis being so young and being at university when it’s such a difficult time in itself?
Sarah: I think it probably helped me. I was really, really busy. I was doing my degree and I had to get on with that if I was going to pass that. I also had my sports. So, by this point, I was doing rowing, I was also playing basketball and still doing my athletics. I had an amazing group of friends who were very supportive of me. Whilst I’m not going to pretend there weren’t some wobbles, and some rather large nights out with some rather messy ends, which I guess happens in every university student’s life. But I think when you’re processing that information, I was probably more vulnerable, and I was tired and had had a couple of drinks. And so, I think I just rode through that rocky road, and there were many more good days than there were bad days. I remember one particular day and I was doing my sport, and it started to hurt, and you know, sport does hurt you. If you’re going to be an elite athlete, you push your body to pain. And it started to hurt, and my brain went into that, ‘Oh, poor me, I’ve got Huntington’s’, and I stopped. I stopped on the rowing machine. And I remember my coach just looking at me going, ‘Sarah, what’s wrong? Why have you stopped?’. And I went ‘I’ve got Huntington’s!’. And he went, ‘Not today you haven’t, get back on’. I looked and thought, ‘I hate you, but you are right.’ And I was very lucky because I was surrounded by people who knew when to give me a hug, and Ian Dryden, who gave me that comment, is one of my greatest friends today, but they also knew when to give me a kick. And that’s what I needed that day. I didn’t have Huntington’s then and I don’t have Huntington’s today. I have the gene. And I think being able to keep it in its box when I need to, really, really did help me.
FLG: You mentioned you have siblings. How did you feel knowing you were the only child affected?
Sarah: It’s a really good question. Because when you’ve got siblings, and we’re incredibly close as a family. We’re very lucky that we’re close. My brother is 14 months older than me. And then mum remarried, and I have a little brother and sister that I have been part-mum to, and part-sister, because of the complexity of a caring family or a family when you’re caring for someone who is ill. And I genuinely think, Shannon, for me, I was always grateful that if any one of us was going to have it, I wanted it to be me. I wanted to deal with it and not have them have to. And I watched them go through their testing, as they now have all been tested. And with each good news, it was a celebration, and I was absolutely delighted for them. I think when my final sibling got tested, I had another sort of wobble, which I didn’t expect. It sort of hit me from the side, an ‘Oh, poor me’ moment. Because there was that moment that I was the only one. I was different from my siblings. And actually, I was lucky enough that my sport psychologists had worked with me, not on me, when I was an elite athlete and they had taught me a lot about psychology and how I could control my thinking. And I managed to shift my thinking from ‘I’m the only one to three out of four’ to ‘We’ve beaten the odds’, and that absolutely transformed how I felt about their results. So, I knew when I was looking each one of them in the face, I wanted their news to be the news it was. Then I see the three of them and there was that short, dark period when I really struggled with that. And I was quite old by then, it was a real surprise because I had known my news for a long time.
FLG: What support did you receive after you got your diagnosis? And what support have you received since?
Sarah: Yeah, I think, critically, Ann Kershaw and the Brain Repair Centre at Addenbrooke’s were phenomenal. I was able to go and join some of their studies, so PREDICT-HD and some of the studies that you may have heard about, to monitor Huntington’s patients. And suddenly you’re in a community and they’re checking in on you, as well as using you as a lab rat, if you like. A couple of weeks after the diagnosis, Ann phoned me up and left a message on my answer phone, I was lucky enough to have a phone in my room at university, and she was able to do that. And actually, years later, when she retired, she sent me an email and just went, ‘I’m retiring now, but I’m delighted to know that you’re still well’. So, I’ve had these amazing individuals who have cared about me, and I think as a Huntington’s family, we see that happening. Because people who work with our community tend to work with us for an awfully long time because of the family units and because you hopefully can follow people longitudinally. So, I think being part of the studies has really, really helped me. The community have also helped me.
I’m patron of the Scottish Huntington’s Association, which sounds very grand in the title. But actually, what it is, is a family of people who have got the same disease, and we are able to work together through some of the emotions that inevitably you go through. So the charities have really helped me and some of the researchers I’ve become, again, lucky enough to stand on stages every now and again, and be able to speak to some of the researchers. And through the conversations I’ve had with them, friendships have grown, and just the excitement when they think they’re coming near a breakthrough, and that they hope that they can make a difference to the community, is palpable, and what an amazing, dedicated group of people they are.
FLG: What made you want to become a patient advocate and help raise awareness? And how do you feel your platform has helped you do that?
Sarah: I think, Shannon, like other things, it was not planned. We had a campaign in Parliament a little while ago, Hidden No More. That was about HD and bringing it out and bringing out the family secrets. And my family, as I shared earlier, was one with our secrets. And you know, when I was competing at elite level, I didn’t really tell that many people. People knew because I didn’t hide it, but I didn’t have the conversations. So, I remember, when I got the option to be a patient advocate, and I’d had a fantastic day at the office as an elite athlete, I’d won some competition and the journalists wanted to talk to me and I managed to manage these interviews pretty well. And I was talking to my coach afterwards, and I said to my coach, ‘Oh, everything went well, apart from this one question that Cathy Wood asked and Cathy said…’. My coach is shaking his head and I’m thinking, I don’t know why he’s shaking his head, but I’ll continue, ‘Cathy asked me about where was mum and I didn’t know how to answer that question. Why wasn’t she here supporting me and was she watching at home?’. And of course, by that point, mum wasn’t that well, and she might have been watching home, but I didn’t know if she was understanding it. And my coach was shaking his head because Cathy Wood was standing on my left shoulder and listening to this. And Cathy said to me, ‘Why did I ask something wrong?’. And I said, ‘No Cathy, but mum is not well and so it was a difficult for me to answer’. And actually, through that conversation with Cathy, I was able to do a large article in The Daily Mail. I was able to the first time share with the globe (anyone who’s reading The Daily Mail) my Huntington’s status. And it was an interesting choice, because I remember talking to my partner at the time, and I said, ‘Oh, you know, I’m thinking of doing this, what do you think?’. And he said, ‘Well, you’ve never told me that you’ve actually got Huntington’s. I mean I know, but you haven’t had that conversation with me’. It’s difficult because when do you have that conversation? I thought, well, I’m never having that conversation with a partner again. They’ll know. And so, I made that choice. At the time, I did it once and then I didn’t do much more for a few years. I got on with my elite sporting career. And then when I retired, and I was in that earning, learning and making a difference period, I really felt I could make a difference. I had an Olympic medal in my bag, I’d been world champion, I had a platform, and I could talk about my journey and my experience, and I genuinely hoped it might make a difference doing that.
FLG: It was recently Huntington’s Awareness Month and there was a campaign launched known as the Family Matters campaign – would you be able to discuss what it is and how it came about?
Sarah: Yeah, it felt incredibly important to keep making sure that Huntington’s comes out of the closet, if you like. People understand it more. It is a rare disease, which is a fantastic state for it, because there’s not lots of people who do have it. But for us, it really does go through families. We see isolation being incredibly challenging for families, secrecy being incredibly challenging for families. And we really want to do a campaign where people could tell their stories. So, Family Matters was about creating some videos and sharing some of the Huntington’s stories. And the four videos that we did, I mean, I wept my way through them, they were extraordinary, because they were funny, they were touching, and they shared different stories about families. We also had a living wall where people could share their own stories, contribute in their way. And basically, the aim of the campaign was to raise awareness, so that more people would understand what Huntington’s might be if they saw a Huntington’s patient who was either slowing their words or not able to move. Instead of assuming they were drunk or on drugs, they might think, ‘I wonder what’s going on there. They might have something neurological going on’. So that was the aim of the campaign. But the secondary piece, is it really did bring the community together. It was another opportunity for us to stand side by side and just share our perspectives.
FLG: How has the pandemic impacted the Huntington’s community?
Sarah: First and foremost, Huntington’s families tend to be challenging places, you’ve got young carers in there, you’ve got someone with the disease, you’ve got partners caring for their loved ones; it’s intergenerational. So, we do see some massive challenges. And of course, many of our most ill patients are in care homes. So first of all, there was that isolation piece, the fear of what was going on in care homes in this country and also, you just simply couldn’t get to see your relatives, and that is incredibly difficult for families. And then there was no respite. So usually, a young carer might get to go to school, usually in the Scottish Association. We try and do some summer camps and make sure there’s some bits where they can just be young people – none of that could happen this year. And then there was the isolation. So, the bit where we should try and really bring the community together, you simply couldn’t do that. So, for me, I was incredibly concerned about our families and making sure that I would do anything I could to reach out and just touch base. And then, with the research, we’ve been in this incredible hopeful place, with several studies going on. And both of them actually failed at the end of the last wave and the lockdown. So, I think for some of our community, and those patients who were on those trials, it’s been incredibly difficult, because that hope, at the moment, feels further away than it did before for the researchers, the families and for the patients. I think that’s been incredibly tough.
FLG: Are there any promising research projects in the pipeline?
Sarah: Yeah, I think there are multiple more. We’re very, very lucky. One of my scientist friends calls it the most curable non-curable disease and that there is deep understanding. And as I said, we were at this dawn of being able to have this prophylactic. It wasn’t a cure, but it was to keep people well. But there are other pieces. Gene silencing would be a key thing that we might be seeing. And of course, there are new studies all the time. I wouldn’t be able to say which one I think is the most successful, but we are very lucky that it is a reasonably simple disease. They understand what it is that is making people ill and hopefully, if they can create an intervention early enough, Huntington’s sufferers will be a thing of the past.
FLG: How does your diagnosis affect you day-to-day?
Sarah: When I was an elite athlete, I lived my life in four-year cycles, and that gave me great comfort. If I was able to compete at world class level, clearly, I was well. And what I did notice that was when I retired, I kind of chopped my life into four-year cycles again. But I think on a day-to-day basis, it gives me an excuse to stay well and prioritise myself. I know my brain probably is already challenged by the genetics that I have. So, if I can sleep well, eat well, exercise well, things that we all could, and should, be doing, I’m likely to stay well longer. And that gives me a great excuse to prioritise myself, be properly selfish, when I know that can be really hard, especially when there’s lots of other things going around. I also do talk about it. It’s not something I talk about every day, but I will share my Huntington’s story, my thinking when I’m working with teams, sometimes just to really talk about what a high performing team can look like. I really do consider my family to be the most important high performing team I’m part of. No one’s going to give us an Olympic medal, but we’ve made it work. I’m incredibly, incredibly proud of that. And I bring that sometimes into the corporate world just to help people think about things differently. So, it’s something I’ve tried to use for positive. It’s not something I can change, so I make it part of me rather than hide it, and I suppose I’m doing my bit making sure that more people know about what Huntington’s is just through telling my story.
FLG: What would be the one message you would give to families or friends affected by Huntington’s disease?
Sarah: Find the community! Don’t struggle on your own. I watched my stepdad and he’s the most incredibly strong guy; he didn’t use the Huntington’s community. It might not be the Huntington’s community that you want or need. He found a different community, an amazing group of friends from the rowing community to support him. But find your people and ask for help because it’s a long road. It’s a marathon and it’s not a sprint. And the thing we learned with mum, and what I hope I hold, is keep humour. The families that I see, if we can find humour in the difficult moments, when you can look back at them and find them funny rather than sad. It definitely does help.
FLG: Thank you so much for joining me, Sarah. It’s been really great listening to your story. It is truly inspirational! Thank you so much.
Sarah: Thank you!