March 2024

Achievements, Stories & Steps Ahead

As we celebrate our third year, it's a time for both reflection and forward-thinking. This period has been one of significant growth and learning, driven by the invaluable contributions and shared experiences of our dedicated community. The strides we've made together have enhanced the support for individuals and families navigating the challenges of aortic dissection.

Looking back, it's the collective wisdom and resilience of this community that have shaped our journey, enabling us to provide the change needed. As we venture into another year, our focus remains on deepening insights and extending our reach, ensuring that every person touched by AD feels supported and informed.

Let's catch up on what we've been doing….

Education

This year, we expanded our educational outreach, engaging with pivotal events from the Coroners’ Society of England & Wales to practical workshops with the UK's Ambulance Service aimed at improving emergency AD responses. Our education extended to our Annual Scottish Meeting, the London Primary Care Network, the European Society of Emergency Medicine, the British Association of Critical Care Nurses, and the Society of Clinical Perfusionists, all aimed at enhancing early detection and post-operative care.

Internationally, we participated in discussions at the Yale University School of Medicine and contributed to the SCTS Annual Meeting 2024, exploring the latest in surgical advancements and patient care strategies. Each event is a step forward in our ongoing effort to improve outcomes for those impacted by aortic dissection, through a blend of local insight and global expertise.

We're excited to introduce the inaugural UK Aortic Nurses Symposium in June, spotlighting the pivotal role of specialist aortic nurses in enhancing patient care. This event is designed for nurses and allied health professionals passionate about aortic dissection, offering a platform for education, discussion, and collaboration.

Join the aortic dissection community

Stay ahead with the latest in aortic dissection research, resources, and events. Become part of the movement that's shaping a brighter future for everyone affected by this condition.

Research

This year, we've broadened our Research Advisory Group, bringing in new patient and healthcare professional members to deepen our research insights. Our support for the ASES study was a key highlight, with insights shared by Valérie Lechenne and Professor Steve Goodacre in a recent webinar.

Additionally, we're pleased to announce that our 2024 research awards are now open, with winners to be unveiled on September 19th, 2024.

Policy Change

Following our productive meeting with the Secretary of State for Health and Social Care last April, NHS England has been diligently expanding the scope of an Elective Toolkit for aortic dissection patients. This initiative has gained momentum, particularly as the acute aortic dissection Toolkit begins to be implemented across various regions. The Trust has played a supportive role, facilitating discussions and providing insights in the North West, North East, Yorkshire, and the South recently. It's heartening to witness the tangible progress in these areas, reflecting a collective commitment to enhancing care and support for individuals affected by aortic dissection.

Resources

In a significant step towards supporting those living with aortic dissection, we've collaborated with the British Insurance Brokers’ Association to launch a comprehensive insurance guide. Further enriching our resources, we are due to host an 'ask me anything' style webinar with an insurance expert, providing a platform for open dialogue and personalised advice.

Our educational materials continue to make a substantial impact, with our 'Could it be AD?' animation reaching nearly half a million views since its launch a year ago, and our other educational resources being accessed over 20,000 times, testament to their value and relevance within the community.

Advocacy

Our advocacy efforts have gained significant attention, with notable mentions in mainstream media. Bob Harris OBE discussed aortic dissection on a recent episode of Channel 4’s Countdown, bringing wider visibility to the condition. Further highlighting the personal impact of aortic dissection, The Sunday Times featured an interview with Pauline Latham OBE, where she shared the story of her son Ben's passing due to AD.

Our cause has also been represented in articles across various publications, including The Telegraph, Sunday Express, and Huffington Post, contributing to a broader dialogue around aortic dissection. The patient community has been instrumental in this effort, with individuals like Emily sharing her story on the BBC Kent, linking personal challenges to our awareness campaign.

Sadly, we mourn the loss of Sharon Sewell, patient ambassador whose contributions to education and raising awareness about aortic dissection have been invaluable. Her courage and commitment have deeply impacted our community, leaving a lasting legacy of advocacy and support.

Fundraising

Our fundraisers have shown extraordinary dedication and creativity in supporting our cause, each with a unique story to tell. Rachel climbed Roy’s Peak Mountain in New Zealand, alongside Alice's efforts, paid tribute to Gavan, who bravely faced multiple aortic dissection surgeries. Steve Perryman MBE has been actively touring the country, sharing his personal aortic dissection story and raising funds through raffles of celebrity memorabilia, alongside sales of his limited edition signed prints.

A notable event was held at Kington café, where an auction for Steve Brothwick's signed England RFU Jacket, featured in the Netflix documentary "Six Nations: Full Contact," took place, gathering community support and awareness. In Derby, Pauline Latham OBE was warmly received at the Spondon Village Club, where she accepted a generous donation of £1,000, a result of the club's dedicated fundraising over the year.

Tracey's fundraiser, commemorating what would have been Ben's 50th birthday, raised £2,700, aiming to elevate awareness and prevent others from experiencing the profound loss they have faced.

Lauren's combination of a quiz and karaoke evening brought people together in remembrance of her father, who died from a sudden aortic dissection ten years ago, raising an impressive £4,000. Meanwhile, the Werrington Joggers in Peterborough contributed £1,200 to the charity during their Annual Awards and Achievement Ceremony, inspired by a group member who suffered a sudden cardiac event during a run.

These heartfelt initiatives reflect the community's commitment to raising awareness and funds for aortic dissection research and support.

Get Involved

By joining Team Aorta, you can contribute directly to our cause. Fundraisers are actively participating in running, walking, cycling, and swimming events to fundraise for the Aortic Dissection Charitable Trust 2024 research grant fund. This fund is dedicated to supporting projects that focus on better clinical care for patients, life-saving measures, and improving the quality of life for those affected by aortic dissection.

Thank you for all that you do and for your ongoing support.

Together, we are shaping a safer future for people impacted by aortic dissection across the UK and Ireland.

More news to follow soon, in the meantime, join the #aorticdissection conversation online: