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On Sunday 19th May I will once again be running in The Binfield 10k.This will be a hard one, the first without John being there at the finish line (he was always there-whether he wanted to be or not!)

I will though be running in his memory and as such will be running to raise donations and awareness of Marfan syndrome and The Marfan Trust.

As lots of you are aware,John had Marfan syndrome and was regularly monitored at The John Radcliffe and Royal Brompton hospitals as well as having major surgery at The Brompton.

Unfortunately one of the affects on the body is heart related, affecting the aorta (the major blood vessel to the heart),causing it to enlarge.John had regular scans to measure this enlargement, but very suddenly and very sadly on the 1st September 2023 John suffered a thoracic aortic ruptured aneurysm.

Marfan syndrome is a lesser known genetic disorder of the bodies connective tissue that affects men and women of any race or ethnic group, with an incidence of 1 in 3,300 worldwide.The syndrome can be inherited, but can also occur spontaneously with no family history. Currently only 9,000 patients are diagnosed in the UK, although researchers fear there could be thousands of undiagnosed cases owing to a lack of awareness of the condition.

Marfan syndrome is known to affect the body in the following ways:

Eyes-dislocation of lenses, retinal detachment, short sightedness, glaucoma.

Skeleton-excessive height with long limbs and fingers, flat feet, protruding or indented chest bone, loose joints, scoliosis, early osteoarthritis.

Heart-ballooning and potentially fatal tearing of the aorta, backwards billowing of the hearts valves.

The Marfan Trust a lesser known charity, is the sole charity in the UK dedicated to improving and saving the lives of people with Marfan syndrome.

The Trust supports patients and their families through its personalised helpline, offering medical and emotional advice by phone email, and one-to-one zoom appointments with its nurse specialist. The helpline also extends to monthly drop-ins for patients and parents.

The Trust raises much needed awareness of this uncommon syndrome through its website and social media pages, constantly updated with new materials, and also medical webinars, conferences, literature and awareness campaigns.

Finally, the Trust conducts cutting-edge research into improved treatments for the syndrome. The results of its internationally recognised work has helped patients worldwide.

I am aware that lots of you have already been so generous in donating to this as well as other charities in Johns name. I’m just asking and hoping that maybe if you haven’t donated or wish to donate again you will, in Johns Memory.

Thankyou so much for reading and Thankyou in advance for any donations, I and The Marfan Trust will be truly grateful. Any donation helps both The trust and to keep the memory of my lovely lovely John alive.

Thankyou x

❤️