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June 2021

Welcome,

It is only three months since we officially launched the charity on 31st March, but those months have been very busy. We have been engaging with many of those who have contacted us and also been involved in the design and delivery of a series of educational events, which has helped to enhance the knowledge of over 1,250 pre-hospital and primary care clinicians so far.

We are delighted with this overwhelmingly positive response and support the charity has received. Lots more is in the pipeline regarding events, research and policy change.

Team Spotlight

Education

Bob Harris appeared on the BBC Radio 2 Jeremy Vine Show on 30th April reaching 5.2million listeners to learn more about aortic dissection and our charitable aims. Bob talked about his personal experience of aortic dissection and has probably introduced aortic dissection to its biggest ever audience in the UK.

We worked in partnership with the Brighton and Sussex Medical School to create and deliver an Aortic Dissection education session aimed at medical students.

Working with West Midlands Ambulance Service’s Adam Joynes and Sophy Freer TADCT designed and delivered an engaging CPD event for paramedics. The event was inspired by Joanne Jackson who survived her aortic dissection which was originally misdiagnosed. Joanne is passionate that others learn from her experience and she teamed up with her niece Sophy Freer (who is a paramedic) to inspire change and education.

We were delighted to be invited to deliver a seminar for the Rare Disease Europe 2021 members meeting to share our experience of raising the profile of a rare disease with the national media. It’s fantastic to be collaborating with so many other groups to grow experience in many important areas collectively.

We also delivered an educational session at the College of Paramedics Annual Conference and the first session of our AD pathway events hosted by CPDme, reaching the UK’s national audience of paramedics. These sessions provided key education and guidance on the signs, symptoms and aortic dissection patient profiles, enabling our first responders to suspect and detect aortic dissection.

Over the past months, we have met with many key stakeholders from across the aortic dissection treatment pathway and are developing resources to support general practice in looking after their patients with aortic dissection, providing lifestyle advice for patients and improving education in maternity services.

We are currently having extensive consultations with paramedics, emergency physicians and acute physicians to understand how we can improve the acute pathway for patients with aortic dissection and reduce the rate of missed and delayed diagnosis.

Fundraising

Thanks to everyone who has been getting involved with fundraising, your support means we have the funds to increase our reach in education, research and policy change to save lives and improve patient outcomes.

On 19th June ‘Belvedere Plodders’ are undertaking the North Downs Challenge 25k walk led by Tim Dickson. They aimed to raise £250 and have already raised over £700 with a battle rope challenge and raffle.

Dave Trolle cycled 200 miles over 10 days in memory of Ben Latham and raised a staggering £1510.

Stefano, a cardiac and aortic surgeon from Sheffield will be cycling the 1,500 miles from Sheffield to Rome to raise funds for the charity. He has completed the first two legs and when Covid travel restrictions allow he will start the continental leg.

John Goulding, aged 80 years, will be walking 80 miles in 10 days, starting 12th September. John’s daughter Joanne suffered a misdiagnosed aortic dissection but thankfully survived. Joanne’s niece, Sophy, who is a paramedic for West Midlands Ambulance Trust, will also be running the Manchester marathon to support the charity.

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We would like your help in giving this newsletter a name. All suggestions welcome!

Thank you,
Catherine, Pauline and Graham
Board of Trustees

More news to follow in the next few months

But in the meantime, come join the #aorticdissection conversation online: