Marfan Trust

Marfan Trust Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Marfan Trust, Nonprofit Organization, c/o 24 Oakfield Lane, Keston, London.

Founded in 1988, the Marfan Trust funds research into the cause and prevention of Marfan syndrome, a dominantly inherited cardiac disorder which also affects eyes and skeleton.

Reminiscing on scenes from a symposium held in Liverpool last week, where some of the world’s greats in aortic surgery a...
12/06/2026

Reminiscing on scenes from a symposium held in Liverpool last week, where some of the world’s greats in aortic surgery and genetics assembled for Aorta: Structure to Rupture. Liverpool hosts this conference biennially and the Marfan Trust was fortunate to spend time amongst many brilliant nurses, engineers & medics, including visitors from the US such as Dr Duke Cameron, Dr John Elefteriades and Dr Dianna Milewicz.

Amongst the many lectures and discussions unfolding across the symposium was fascinating conversation around how AI may begin to improve the diagnosis of connective tissue disorders (CTDs) by recognising some of the facial features associated with different CTDs.

But perhaps the symposium’s most memorable moments came when patients with Loeys-Dietz syndrome had the opportunity to meet the clinicians behind the name. Following their keynote lectures, Dr Bart Loeys and Dr Hal Dietz hosted a lunchtime forum for patients and generously answered questions about treatment options, ongoing research, fears and concerns surrounding the condition. Read our full account: https://tinyurl.com/2e6rft46

Flanked by members of the medical profession, Derek is subtly educating clinicians about Marfan syndrome. At the recent ...
08/06/2026

Flanked by members of the medical profession, Derek is subtly educating clinicians about Marfan syndrome. At the recent PACES Ahead doctors’ mock exams, he was assessed by 150 doctors-in-training and, after some prompting (and a glimpse of his INR booklet), between 40 and 50% correctly identified his condition. Derek said "things are definitely travelling in the right direction".

Standing at 5 foot 7, Derek surprised many of the medics, who had expected someone with Marfan syndrome to be much taller. This proved fortuitous, reinforcing an important point - height is relative, and not everybody with Marfan syndrome is unusually tall compared with the general population.

Meanwhile, once Derek’s diagnosis had been confirmed, many of the medics asked him to demonstrate some of his hypermobile hand party tricks. He also noticed that far fewer doctors were familiar with Loeys-Dietz syndrome.

If you’d like to help raise awareness of Marfan or Loeys-Dietz syndrome, then click here. https://tinyurl.com/2temju74

Translating medical reality into eye-catching art, fine artist Zoe Ridgeway has enlivened our social media graphics with...
07/06/2026

Translating medical reality into eye-catching art, fine artist Zoe Ridgeway has enlivened our social media graphics with her wonderful imagery. Zoe lives with Marfan syndrome and volunteers for the Marfan Trust. On this final day of Volunteers’ Week, we would like to pay tribute to Zoe. https://tinyurl.com/b7rspy48

Quietly watching his sister navigate a chronic health condition has shaped Henry’s understanding of human resilience. He...
05/06/2026

Quietly watching his sister navigate a chronic health condition has shaped Henry’s understanding of human resilience. Henry is 14 and his younger sister Isabella has Marfan syndrome. Together they've devised safe and creative ways to play that will not put her at risk. Henry has since volunteered his many skills to the Marfan Trust, and during National Volunteers' Week we would like to publicly thank him! Do read his wonderful article, Growing Up with Marfan Syndrome: A Brother's Perspective! https://tinyurl.com/6pasuf7p

Amid the hum of medical and scientific exchange at the Liverpool Aortic Symposium XI, the Marfan Trust is proudly repres...
04/06/2026

Amid the hum of medical and scientific exchange at the Liverpool Aortic Symposium XI, the Marfan Trust is proudly represented! This year's symposium places particular emphasis on syndromic disease of the aorta.

Meanwhile, our PhD Lab Student, Jessica Alvarez (pictured in pink) is attending the conference and deepening her knowledge as she pursues her research into neonatal Marfan syndrome.

The most severe and earliest-presenting form of the condition, neonatal Marfan syndrome is usually associated with mutations occurring within a particular region of the genome, between exons 24 and 32, the protein-producing part of the gene. Jessica's research, however, has revealed that these mutations can also occur beyond this recognised spectrum. More fascinating still, it was found that the very same mutation can present with strikingly different clinical features and outcomes.

Pounding the streets of the capital, propelled by the knowledge that every one of the 26.2 miles mattered, Kirsty comple...
01/06/2026

Pounding the streets of the capital, propelled by the knowledge that every one of the 26.2 miles mattered, Kirsty completed the London Marathon four weeks ago. Here she is, elated as she approaches the finishing line. Kirsty has now closed her fundraising page, having raised just shy of £4,000 for the Marfan Trust! This is an astonishing amount!

Kirsty’s husband and young daughter have Loeys-Dietz syndrome (LDS). LDS was first described in 2005 by Drs Bart Loeys and Harry Dietz. It is caused by a variant in one of the genes in the transforming growth factor-beta signalling pathway, TGF-β.TGF-β is a crucial signalling pathway involved in various cellular processes, including cell growth and immune responses. It is a key player in development and tissue repair. When a gene change occurs, it has implications for many systems of the body.
The genes that cause LDS are: TGFβR1, TGFβR2, SMAD3, TGFβ3 and TGFβ2.

Whilst symptoms vary from patient to patient, with some being similar to those of Marfan syndrome, the most common characteristics are: arterial tortuosity, aortic enlargement, bifid uvula, curvature of the spine, high-arched palate and over-crowded teeth. For more information, click here: https://tinyurl.com/yc479wd7

In the meantime, we look forward to meeting Drs Loeys and Dietz at the Liverpool Aortic Symposium this Thursday.

Reflecting on the intricacies of aortic measurements and the genetics that shape connective tissue disorders, patient pi...
31/05/2026

Reflecting on the intricacies of aortic measurements and the genetics that shape connective tissue disorders, patient pioneer Tal Golesworthy is a fascinating guide in this latest conversation with the Marfan Trust. Watch it now: https://tinyurl.com/3cnpnwpn

Turning his focus to our window on the world, the eye, our Research Director, Dr Jose Aragon-Martin, explored the geneti...
26/05/2026

Turning his focus to our window on the world, the eye, our Research Director, Dr Jose Aragon-Martin, explored the genetics underpinning lens dislocation in Marfan syndrome at the annual congress of the Royal College of Ophthalmologists last week. Here is what he had to say:

"On Wednesday, 20 May 2026, I attended and presented at the annual congress of the Royal College of Ophthalmologists in Manchester. My presentation focused on the genetics underlying weakness of the fibres that hold the lens in place and how changes in the FBN1 gene may contribute to ectopia lentis (dislocation or displacement of the lens in the eye) and other clinical features of Marfan syndrome, including aortic aneurysm.

I also shared broader concepts from our ongoing research at the Sonalee Laboratory and the Marfan Trust. As this work remains unpublished, I could discuss only the general scientific themes, but our aim is to improve understanding and support future patient care. It was a pleasure to engage with colleagues across ophthalmology, genetics, and connective tissue disease research, and I was proud to represent the Marfan Trust."

From chilly grey skies into an oppressive heatwave, parts of the UK have lurched into sustained heat, something that c...
25/05/2026

From chilly grey skies into an oppressive heatwave, parts of the UK have lurched into sustained heat, something that can have indirect ramifications for INR levels. Read our helpful words of advice:

INR (international normalised ratio) is the standard way in which to measure how long it takes your blood to clot. It is especially important for people on anticoagulant therapy (like warfarin). There are different INR targets according to the condition warfarin is being used to treat so different people may have different INR targets.

Heat can affect the stability of your blood-thinning medication and the body's metabolic process and in doing so, your INR level.

Whilst heat does not directly change INR, it can indirectly affect it through...

* Dehydration

* Changes in Diet: In hot weather, people may eat differently, for example, fewer leafy greens (which are high in vitamin K) or more fruits and fluids. Since vitamin K affects INR, changes in intake can alter INR levels.

- Click here to read the full article: https://tinyurl.com/fecmzjja

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