About Us

MyocarditisUK (formally The Alexander Jansons Fund) was set up after the death of Alexander Jansons from Myocarditis in July 2013, at the age of 18. With little to no information provided on this inflammatory condition affecting the heart, the charity was founded to research the causes, prevention and cures for Myocarditis.

Who We Are

01

Alexander Jansons Myocarditis UK is the UK’s only dedicated myocarditis charity. This disease affects all ages but specifically the young. We work tirelessly to raise the money to Find Tomorrows Cures Today.

02

The British Heart Foundation, amongst others, recognises us as one of the UK leaders in Myocarditis research.

03

Our research covers a range of complimentary avenues so that we can work in harmony towards better understanding myocarditis and achieving top results.

04

We support young, diverse researchers to reach their potential and expand their knowledge.

05

Alexander Jansons Myocarditis UK may be a small charity, but we are part of a global team using State of the Art techniques to test our research and expand our knowledge in understanding and finding a cure for myocarditis.

06

We fund key research into the effects of COVID and Myocarditis. We are transparent in our research and influence at government level.

Charity Milestones

2022

Boing

This was the first year that we combined forces with national retailer, BOING Jewellery, to raise both awareness and funds for myocarditis.

2021

NHS

2021 We published research that influenced the publication of guidelines for professionals in the NHS at government level

2019

British Heart Foundation

2019 saw us being asked by the British Heart Foundation and National Institute of Health Research to lead the national programme of research into

2018

Charity Ball

2018 marked our 5th Anniversary and we celebrated with a host of fundraising events including our first ever charity ball.

2016

Skydive

2016 marked our first ever charity Skydive and has proven to be a much loved and anticipated event in the social calendar for adrenalin fuelled daredevils and brave people conquering their fears alike.

2015

Publish A Research Paper

Dr Sanjay Prasad recognised the need for research into this little-known disease and in 2014 through our funding, was able to research and publish the first of many research papers – 26 and counting to date!

2013

Raised £80K

Since 2013, we have pledged to rise a minimum of 80K per year towards research and even in our 1st year, were able to reach this! We have continued to successfully raise funds to further the research and awareness of Myocarditis.

Donation & Research Journey

Alexander Jansons Myocarditis UK is a 100% non-profit organisation. All our donations are used towards furthering and achieving the charity’s 3 main aims as well offering information and assistance to clinicians and researchers.

Raising Awareness

Making Myocarditis a household name and helping the public, general medical practitioners, A and E centres and medical personal to know and understand what to look out for is a key step in identifying, diagnosing, and treating myocarditis. Increased awareness of myocarditis helps us engage with more both the public and corporate arenas to improve our funding and our reach.

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Early Diagnosis

The earlier that myocarditis is identified and treated, the better the outcome for the patient. Myocarditis is difficult to diagnose due to the symptoms which present as other ailments (especially in the young) and the more questions we can answer, the closer we are to a cure. We are committed to making myocarditis easier to understand, to diagnose and ultimately, to cure.

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Prevention & Treatment

We do know that we are a long way away from finding a cure for myocarditis, but we have made significant progress in identifying blood proteins along with great strides in identifying specific genetic markers that may make a person more susceptible to myocarditis and helping us to understand why.

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Clinicians and Researchers

We have come a long way since we began in 2013 where there was hardly any information available on myocarditis and no one in the UK was conducting any formal research into myocarditis along with the possible causes of why some hearts are susceptible and how to treat them. Over the years we have written and published several our research findings and at the end of the COVID pandemic, our research was used to assist government in their published guidelines for healthcare professionals on myocarditis and pericarditis following the COVID-19 vaccinations.

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Leading Research with our Leading Team

The Alexander Jansons Myocarditis UK charity believes in quality research and in being transparent in all our research and our findings. We do not support or use any animal testing in our research. We believe in our team, in following due process and in achieving the best results we can.

THE PEOPLE BEHIND THE RESEARCH

Alexander Jansons Myocarditis UK works closely with a team of team of dedicated researchers from Royal Brompton and Harefield Hospitals and have also benefitted from working with some of the best researchers at MIT university USA and University of Hamburg.

Meet The Team
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SEEING DONATIONS AT WORK

Fundraising to fund medical research and raise awareness is often a difficult and confusing concept to identify with. Alexander Jansons Myocarditis UK has been fortunate in the generosity of our supporters and together we have achieved more than we thought possible for a small charity. We are proud of our achievements and excited about the rest of our journey.

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Top 10 Charity Achievements

1. Research Cohort

This currently has 250 patients. The Cohort allows us to study real patient data and monitor myocarditis at different stages. The success of our patient cohort has resulted in a comparison patient cohort in the Netherlands allowing us to compare data and double results.

2. Titan Gene

Identifying and understanding the importance of the Titin Gene (TTN), a giant protein, and the mechanisms and truncation variants which are the amongst the most frequent causes of heart failure has been a vital component of our research and furthering our understanding of the factors that influence the heart and myocarditis

3. Point of Care Test

The inspiration for this was patient lead and will be a test that can be done by any GP to indicate heart distress by testing for both Troponin and BNP, which when elevated are markers of hear strain. This will enable GP’s to determine in as little as 10 minutes that a patient needs cardiovascular imaging and testing.

4. Drug Success

Refers to research paper in which some patients were taken off the drugs and some were left on the drugs. Those who came off did badly and those who were left on made a full recovery. This has been a significant step in understanding the treatment of myocarditis.

5. Heart Hive

We were instrumental in getting the Heart Hive launched and so far, funds from Alexander Jansons Myocarditis UK have helped get 490 people signed up to the cohort. The Heart Hive is a research community for study in cardiomyopathy and myocarditis. They are currently recruiting participant to determine the effect of COVID -19 on healthcare.

6. Research Cohort

This currently has 250 patients. The Cohort allows us to study real patient data and monitor myocarditis at different stages. The success of our patient cohort has resulted in a comparison patient cohort in the Netherlands allowing us to compare data and double results.

Charity Aims

1. Increase Current Research Cohort to 500

Ideally, we would like to increase this 1-2 thousand people but the cost of admitting one person to the cohort is £1000.

To have the document that we have created explaining myocarditis for patients made available on NHS England so that it will be easy for GP’s to print off and hand to patients immediately.

The research used in creating Lateral Flow tests during COVID has greatly helped the advancement of the myocarditis testing kit. Using a newly identified marker, Micro RNA, which is very specific to myocarditis and the next phase of testing will incorporate this into the testing. The next 18 – 24 months research will be able to tell us how much further we are from first phase testing.

Our researchers have been using state of the art technologies, together with the University of Hamburg, to grow “hearts” from skin cells. This allows us to test specific genetic combinations, together with and/or specific drug combinations, making the treatment of myocarditis more targeted and ultimately, finding a cure, a distinct possibility in the future.

There has been a lot of work in the research of gene regulation. We are, for the first time, in a position to study in depth the complex genetic pathways combined with drugs within the heart. This will allow us to give the “right” drugs for each patient rather than a generic treatment plan aimed at DCM.

Fighting Myocarditis Everyday

We are a 100% Non-Profit Organisation enabling us to donate all of any money raised directly to research.

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