Amid alpine peaks and lush green valleys, Mark completed one of the world's most demanding amateur cycling events in memory of his brother-in-law, Jonathan Grainger, while raising funds for the Marfan Trust. Here is his story:

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On Sunday I completed it! I completed the Marmotte cycle challenge in the French Alps to raise money for the Marfan Trust in memory of my brother-in-law, Jonathan Grainger. Covering a distance of 177km (110 miles) with over 5,000m of climbing, this was my toughest ever day on a bike.108 miles and over 15,000 feet of climbing (over half the height of Everest) in punishing conditions in the Alps, completing 4 climbs including the legendary Col De Galibier and Alpe D’Huez. Certainly the hardest ride I’ve ever completed. Why did I do this?...

The Marmotte is one of the iconic cycling challenges in Europe. It includes long climbs, steep mountain roads and a real test of determination. Undertaking this challenge allowed me to fundraise in Jonathan's memory, and to support those living with Marfans.

Jonathan passed away suddenly in April 2024, a devastating and shocking loss to family, friends and colleagues. He was truly one of life’s genuine good guys. It’s cliched, but he really was the kindest person; generous with his love, money and his time; positive; witty; supportive and loyal.

Unsurprisingly we had never heard of Marfan Syndrome until Jonathan was 34 in 2006. Fed up with (what he thought were) migraines, he went to the doctors. Thank goodness the GP that day took the time to investigate the ‘heart murmur’ and refer him for further investigations. Six weeks later he underwent Aortic Root surgery and Aortic Valve replacement in Leeds General Infirmary. A few weeks later, the consultant mentioned something called Marfan Syndrome - that explained a lot! Our toddler twins were then also diagnosed with this genetic condition. (By then we were already bored of the “aren’t they tall” comments!)

Jonathan passed away while doing what he loved - playing tennis. ‘He had so much more life to live’; we miss him with all our hearts.

Marfan syndrome is a genetic disorder of the body’s connective tissue that affects any gender, race or ethnic group. Connective tissue helps provide structure to the body, binding skin to muscle and muscle to bone. It provides the stretchy strength of tendons and ligaments around joints, and in blood vessel walls. In Marfans, a change in the fibrillin-producing gene, fibrillin-1, means that this protein is deficient in connective tissue throughout the body, creating an unusual stretchiness and weakness of tissues.

This has far-reaching implications and can affect the eyes, lungs, gut, nervous system, skeleton and, most dangerously, the cardiovascular system.

The Marfan Trust provides vital support for research, education and awareness. Its work helps improve understanding of Marfan syndrome and related conditions, and supports better outcomes for those living with them.