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Monday 8:30am - 4:30pm Tuesday 8:30am - 4:30pm Wednesday 8:30am - 4:30pm Thursday 8:30am - 4:30pm Friday 8:30am - 4:30pm

Cardiomyopathy UK, 75A Woodside Road, Amersham (2026)

30/12/2025

We’re excited to share a glimpse inside the latest issue of our MyLife magazine 💙

☕️ Coffee & Catch Up: Darren joined from Calgary, Canada, at 7am every week and later travelled to the UK to meet the friends with cardiomyopathy he’d made through the group.

🏃‍♀️ Fundraising and Community: Heather’s family have raised nearly £25,000 in memory of her husband, Brian, alongside Great North Run runners and community clubs (including groups raising £40,000+).

💊 New Medicines Update: What’s coming down the line for ATTR-CM and HOCM – including vutrisiran, acoramidis and aficamten – and how these sit alongside existing options like tafamidis and mavacamten.

👩‍⚕️ Nurse Q&A + Winter Advice: What to do if your pharmacy can’t get a medication, plus Q&As on sleep and heart failure – and how to send questions to our nurse team.

📊 Publication of our State of the Nation report: Of 1300 voices, 34% missed cardiac rehab they wanted, 32% needed emotional support, 28% said care isn’t joined up.

🏥 NHS 10-Year Health Plan: what it could mean for the future of cardiomyopathy care – earlier detection, genomics and more joined-up services.

🧬 Research: how to join our Research Network/newsletter list to hear about clinical trials, surveys and ways you can help shape future care – plus our role in the British Heart Foundation’s £30 million CureHeart genetic therapies research project.

💬 Support & Quality: Outcomes from our ACE programme (e.g., 83% felt less anxious/low after taking part), our ongoing nurse helpline (with an additional Genetics Helpline coming), plus PIF TICK certification and recent award recognition.

📅 Patient Conference 2026 – tickets on sale: “Journeying Together” (London, 28th March 2026) – come for the updates, ask questions, meet the professionals behind this work, and meet other people living with cardiomyopathy.

👉 Read the full issue and explore the MyLife archive here: https://www.cardiomyopathy.org/mylife

You can also sign up there to join the thousands of people who receive free printed copies of MyLife straight to their door.

🎟️ Get your conference tickets here: https://hov.to/0466aad9

23/12/2025

12 Days of Stories - Day 12❤ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is The Coope’s story.

“My name’s Serena, my husband is Steve, and our boys are Harry and George. I was diagnosed with cardiomyopathy during my pregnancy with Harry, who is now 22. I’d been screened as a child because my sister has the condition, but I never showed any signs or symptoms.

Two years later, when our youngest son, George, was born, he had a few complications. He had two small holes in his heart and a thickening in the muscle. At the time, George showed no signs of a heart condition. When Harry and George were aged 3 and 1, they were genetically tested to see if they carried the gene. Harry did not, however George did carry the gene and would need to be continued to be screened each year.

In 2014, we were told the shocking news that George had developed hypertrophic cardiomyopathy. George didn’t really understand what this meant as he was only seven at the time. As his condition became more complicated, he was referred to Great Ormond Street Hospital. Over the years, George has struggled with various symptoms including breathlessness, extreme fatigue and palpitations, which has really impacted his life. George has now had two myectomies. The first was when he was eight years old and then another was last year. George also had an ICD fitted when he was 13.

George handles his conditions well and he’s always had a great attitude. Even when it has been very tough for him, like last year before his operation and his symptoms were so extreme. He’s now starting to feel a lot better and he’s back playing golf, and for the first time he feels like he’s living his life.

When George was first diagnosed, Steve felt very helpless and needed to have something to focus on. He decided to bike from London to Paris. Since then, we have also taken part in fun runs, coffee mornings, skydives and head shaves. Earlier this year, Harry ran the London Marathon. We are proud to have raised nearly raised £50,000 for Cardiomyopathy UK!”

21/12/2025

12 Days of Stories - Day 11❤ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Millie’s story.

“I’m Millie, I’m 22 years old and I was diagnosed with dilated cardiomyopathy in 2023. Growing up, I always struggled with shortness of breath and other symptoms. This was put down to mild asthma. During one of my routine breathing check-ups, the GP listened to my heart for the first time, recognising something wasn’t right. They booked me an ECG which came back abnormal and I was immediately referred to cardiology. After many investigations and hospital admissions, in December 2023 I was diagnosed with DCM. It came as a bit of a shock and, at the time, I didn’t know much about the condition so it was scary for me and my family.

Managing my condition can be quite difficult at times. Such simple activities like brushing my hair or going up and down the stairs can cause debilitating symptoms. I spend a lot of time going to appointments every week which can be overwhelming. I went from being very athletic and active to having very limited energy and ability to do things.

Sadly, having chronic illnesses has affected some of my friendships as it’s difficult for me to maintain plans when I don’t know how I’ll feel on the day or how it may make me feel after. However, I’m very grateful to have such wonderful family, friends, and colleagues who have been so amazing in supporting me with helping me get to and from appointments, advocating for me, helping me with daily tasks that can be difficult, and so much more. Without their support, my conditions would have a much stronger impact, so I’m very grateful.

To anyone who deals with a form of Cardiomyopathy, this is a message to you: You are doing amazing! It’s okay to have good and bad days and to prioritise yourself. Sometimes rest is the hardest but most important thing, so allow yourself to take a break and don’t beat yourself up about it. All that matters is that you’re doing your best.”

19/12/2025

12 Days of Stories - Day 10❤️ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Dilip’s story.

“I had just returned from playing rugby in South Africa in summer 2022 when I began to feel unwell. I persevered and was just completing my university application to study Medicine when things began to spiral. In November 2022, during a rugby match at school, I became very unwell. My GP initially suspected heartburn but then requested an ECG and X-ray, based on my mum’s request. I was eventually admitted to hospital where I was initially diagnosed with heart failure and discharged with medication to manage this.

My condition declined once I was back at home, and I was eventually referred to see a cardiologist in December. The cardiologist performed a right heart catheter and I was diagnosed with dilated cardiomyopathy. My heart deteriorated whilst in hospital and I was put on the urgent transplant list.

Thankfully after 14 days, I received the call that a heart was available. The transplant was a success, and with a few bumps in the road I made a fantastic recovery. Everything happened very quickly and so adjusting to a new way of life was tough. I had biopsies every fortnight for the first four months and took immunosuppressant medication every day.

My diagnosis and transplant happened so quickly that I felt the need to go and research what cardiomyopathy is and why I became unwell. It was during this that I came across the Cardiomyopathy UK website and saw the details about the Youth Panel. I joined the panel because I feel that I am still learning about my condition, and I’m on a long road to recovery. Meeting other people with cardiomyopathy allows us to share our experiences and support each other.

I am now studying medicine at the University of Cambridge and I’ve just started playing rugby again. I’m incredibly grateful for the help and support I have received from all the health professionals over these past few years!”

17/12/2025

12 Days of Stories - Day 9❤️ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Grace’s story.

“My dad, Mark, passed away in 2022 from Hypertrophic Cardiomyopathy. My dad had three daughters – me, Amy and Emma – and he was married to my mum, Danielle. Anyone who knew him would agree that he was a special man – generous, full of life, and the life and soul of any party! My dad was a family man who enjoyed spending time with the people he loved and always made time for his friends.

Cardiomyopathy entered our lives long before we truly knew how much it would impact our family. In 2008, my uncle was diagnosed with cardiomyopathy. It was from that that my dad underwent genetic testing, and in 2010 was diagnosed with hypertrophic cardiomyopathy.

Despite his condition, dad made sure to keep up with his active lifestyle, not letting cardiomyopathy become an obstacle in allowing him to live his life to the fullest. In the more recent years of his life, dad had a newfound love of cycling.

In 2022, ages 46, dad passed away when out on a jog with my sister, Amy. He was always told that he was ‘low risk’ and therefore he could continue all physical activity including his football, running and cycling. Dad never really suffered from any symptoms of his cardiomyopathy, but he continued to have regular monitoring, scans and tests.

Over the last few years myself, family and friends have all taken part in various activities and challenges to raise money for Cardiomyopathy UK in memory of my dad. This has included fun days, cycling events, walks, casino nights and much more which have totalled in us raising over £40,000. My annual fundays have raised £10,000 alone! The fundraising doesn’t stop there as my sister, Emma, is taking part in the London Marathon 2026.

I’ll continue raising awareness and supporting Cardiomyopathy UK, hoping that by sharing my dad’s story I can help others better understand the condition and make them feel less alone throughout their own cardiomyopathy journey.”

15/12/2025

12 Days of Stories - Day 8❤ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Darren’s story.

“I’ve been a member of Coffee and Catch Up for over five years. What makes my story a little more unique is I live all the way in Calgary, Canada and so each Friday I join Coffee and Catch Up at 7:00am.

When Coffee and Catch Up first started, like everyone else in the world, my world was dominated by lockdowns. Having an opportunity to chat to others who have cardiomyopathy seemed intriguing. At that time, the distance didn’t seem like a big issue as we all were spending time in our homes.

As the weeks went on and I got to know people more, the conversations turned more about our lives and not just about our medical conditions. I had never been to the UK before so to hear about life there was fascinating. Eventually a group chat was created, where we could share photos of our lives. As time went on, we have all truly become great friends.

As places opened up after lockdowns and people were more comfortable meeting up face to face, many of the Coffee and Catch Up group began to meet up. This was very exciting to see photos of members getting together, but I was a little disappointed that due to the distance I couldn’t have that same opportunity to meet these friends in person myself. It was my desire to make the trip “across the pond” to also see all my UK friends in person some day.

I was able to come to the UK this past September. While I was only able to stay for 5 days, I spent my time wisely and met with so many friends that I had only seen on zoom for so many years. It was a wonderful opportunity to see as many people as I could, and it really felt like I was seeing old friends despite the fact this was the first time we had seen each other in person.

As I reflect on that trip I am left with such gratitude and amazement. Thank you to Cardiomyopathy UK for first creating the zoom calls and for everyone in the group accepting me. It has truly been an amazing journey for 5 years!”

13/12/2025

12 Days of Stories - Day 7❤ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Sue’s story.

“When I was 34, I had a sharp pain in my chest and breathing problems which were diagnosed as asthma. I had the same pain in 2019, but this time the breathlessness was considerably worse. I went to my local A&E department who agreed with the initial diagnosis of asthma. However, in 2022, I was admitted into an intensive care unit where they found heart failure and I was diagnosed with DCM.

I’ve been able to manage my condition with the help of medication and a CRT-D. At my pacemaker clinic appointment in January 2023, I informed my clinicians that I had resumed cycling and had managed to increase my walking distance. At the time I was exercising on alternate days, making sure to take a rest day in between. They were delighted and informed me that the main principle of giving me a heart device is to enable me to lead a normal life and do the things I enjoy doing.

I’ve always enjoyed walking, cycling and yoga. Since 2023, I’ve been able to increase my exercise tolerance level. I listen to my body and I’ve learnt to accept that I have good moments and not so good moments. I go at my own pace and I’m not bothered if I’m further behind when I am out walking with my partner. I also wear a smart watch to monitor my heart rate when I’m exercising.

In 2023, I explored the possibility of cycling Hadrian’s Wall. I planned out my trip using the national cycle route and booked B&Bs at manageable intervals. I planned to take my folding e-bike so that if I got too tired, I could take a taxi to my next B&B. In April 2024, I began my challenge in Bowness on Solway. I completed the 73-mile route in seven days with one rest day. I will never forget the day I reached Housesteads Fort at the highest point of the route - 260 meters. I burst into tears on my arrival, which concerned the lady greeting me. I told her that reaching Housesteads yesterday was only a dream and today is the reality!”

11/12/2025

12 Days of Stories - Day 6❤ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Anders’ story.

“I was blessed to have Dad in my life. A hero of mine throughout my life and someone to always look up to, and still do!

Dad was diagnosed with Dilated Cardiomyopathy in 1999 and had to take an early retirement, but that didn’t stop him. He never let his condition get him down. He became a stay-at-home dad and always came to support us at school sports matches. A fond memory is watching our favourite shows, Scrap Heap Challenge and You Are What You Eat, with him.

During his forced early retirement, he kept himself busy! He undertook a Masters in Real Estate and he also helped to run a small property company. This is part of the inspiration of why I do the job I do and why I love it! He also was very involved with Cardiomyopathy UK and became a board member for over 10 years, which meant so much to him and all the family.

Dad sadly passed away in May 2022. It was a huge loss for me losing my dad and he was an inspiration and role model in my life. In dad’s memory, me, my mum, my brother and my sister took part in the Tough Mudder. Me and mum have both ran the London Marathon for Cardiomyopathy UK, and I was proud to raise £12,600 when I ran it this April!”

09/12/2025

12 Days of Stories - Day 5❤ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. You can join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Karen’s story.

“A few months before my diagnosis, I was experiencing chest pains which continued until one evening I couldn’t breathe. My GP told me I was too young for it to be heart related (I was 33 years old with an 11-month-old baby). Over the next three months, I continued having chest pains until I was finally given an outpatient appointment, which led to a cardiologist appointment in June 1995.

My cardiologist told me I’d had heart attack, I was now in heart failure, and I was diagnosed with DCM. I was devastated when I received my diagnosis. I wasn’t offered any medication or further tests. When I asked about this, I was told the damage is done now and I should go home and look after my baby.

Following my diagnosis, I was left unsure of what the future might hold. I was told by the doctors they couldn’t guarantee that I would survive the next 12 months, so I decided to focus on making memories with my son, rather than worrying about trivial things like the house being messy. I was told I wouldn’t be able to have any more children, but I still felt lucky that I was able to have my son. I’m delighted to say my son is now 31, I’m 63 and I’ve defied all predictions.

I’ve spent a number of years getting back to good fitness levels. I have lots of hobbies, including pottery, my book club, the theatre, and spending time with friends. Most importantly I have plenty of social interaction and fill my life doing things that I find fun.

Since I discovered Cardiomyopathy UK, I have found a lovely community in the coffee and catch-up group. It’s a kind, relaxed group and everyone has been so welcoming. I love that we can chat about our hearts one minute, and something completely random the next - and we do laugh a lot! It’s been lovely to be able to give guidance to people who have recently been diagnosed and hopefully provide some hope and reassurance, I just wish something like this was available 30 years ago!”

07/12/2025

12 Days of Stories - Day 4❤️ Throughout December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. Join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Mike and Team Carrot’s story.

“In 2001, we lost our dear friend and passionate athlete, Mike. Mike was out running with a friend at home in Essex. Tragically, he suffered sudden heart failure while sprinting the final few metres around his local running track, collapsing across the finish line. Despite the best efforts of a GP who witnessed the episode, Mike could not be saved. His condition was later confirmed as Cardiomyopathy.

Mike was sadly denied decades of life events such as stags, weddings, and starting a family. While most of us teach and some have other careers, we often wonder what Mike would have achieved, given how fully he lived his 20 years with us.

Mike’s legacy is one of passion, friendship, and community. As a dedicated athlete, Mike’s enthusiasm for football and cricket left a lasting impression on all who knew him. His sudden passing due to cardiomyopathy was a profound loss, but it also became the catalyst for the creation of the Carrots Sports Society.

We formed The Carrots Sports Society in 2018 to raise money for Cardiomyopathy UK through a variety of fundraising events. Over the years, these events have included cricket games, football matches, marathons, fitness challenges, golf days, and our AGMs. We chose these activities because they reflect the sports that Mike was passionate about. Our Society has grown to include nearly 50 members, and we have raised over £10,000 for Cardiomyopathy UK in Mike’s memory. We are now at the point where our sons and daughters have started to play in The Carrot’s sporting events, and our vision is that our children will be the ones to carry on raising awareness of this cause in the future when our legs start to give in and it’s time to pass over to the younger generation.”

06/12/2025

Looking ahead to our autumn partner events, we’re excited to share that Royal Parks Half Marathon 2026 places are now live! 🎉

We’d love for you to join Team Cardio next year ❤

Our Challenge Manager, Becky, took on the race this year and shared what it meant to her:
“I signed up for the Royal Parks Half Marathon in October after proudly working for the charity for over six years. I wanted to dedicate the run to the incredible fundraisers I’ve supported, each of them inspired me to lace up my own running shoes. Thanks to the Coopah app, one of our fantastic partners, I hit my goal and raised over £1,700 for Cardiomyopathy UK.

The race itself was unforgettable, the atmosphere was electric and it’s become one of my favourite days!”

Ready to make 2026 your year? Join us:
📲 https://www.cardiomyopathy.org/support-us/royal-parks-half-marathon

05/12/2025

12 Days of Stories - Day 3❤️ Through December, we’ll be sharing stories from people whose lives have been touched by cardiomyopathy. Join the campaign by sharing your own story or leaving a gift here: https://bit.ly/48wb14p

This is Sandra’s story.

“When my father-in-law was in his 80s, his cardiologist noticed a thickening of his heart wall and recommended that my husband and our children should be tested. My younger son was diagnosed with cardiomyopathy in 2017. In 2020, his consultant recommended genetic testing for our family and we discovered that it was actually me who carried the gene for HCM.

It’s now five years since my diagnosis and I feel lucky to live well with cardiomyopathy. I’m mindful of the condition and take care not to overexert myself. I keep fit through walking, cycling, Zumba and Pilates, and I try to eat a healthy diet. I’ve told close friends and family about my condition, but I don’t talk a lot about it beyond this close group as I don’t want my condition to define me.

My priorities in life have changed to some extent. My family and friends are very important to me and I try to spend plenty of time with them. I feel extremely lucky to be fit enough to be involved and help look after my two new grandchildren.

I started volunteering with the charity about two years ago when I became a member of the Priority Setting Partnership for research into cardiomyopathy. It was interesting to be part of a team setting the top ten priorities for research. I joined the Research Grants Committee this year and was involved in selecting two research projects that will receive funding from the charity. I found it really rewarding to follow the process through, narrowing down an extensive list of potential research areas in the PSP to two projects that were granted funding.

It’s a really exciting time for cardiomyopathy research. CureHeart seems particularly promising and I was lucky to visit the lab in Oxford with Cardiomyopathy UK and listen to Professor Hugh Watkins and his team talk about the £30 million project that aims to develop cures for inherited cardiomyopathies using advanced genetic therapies. It really offers hope for future generations!”

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Monday	8:30am - 4:30pm
Tuesday	8:30am - 4:30pm
Wednesday	8:30am - 4:30pm
Thursday	8:30am - 4:30pm
Friday	8:30am - 4:30pm