Support a Quest Across the 7 Seas for Rare Disease Awareness!


Jon Milne is on a quest to race across the seven seas to help raise awareness of rare disease!

Jon has always been a keen sportsman, aged 30 he had to give up his love of playing rugby due to some injuries he sustained taking part in the physical activity and decided to take up sailing. After years of attending multiple sailing courses, and has since become fully qualified in sailing and navigation.

Jon was looking for a new challenge and, with the support of his wife gave up his day job to sail the seven seas. There is only one sailing event in the world that one can participate in that tests endurance, feels the full force of nature and can not be controlled by man. The Clipper Round the World Race.

His journey will be the full extent of the race which will cover eight sections or “legs” and will take not six, but twelve months to complete. He is one of the selected few to take part in the entire course and will join twenty-one people aboard ‘Team Andy” as a mastman. They will be competing against two hundred and forty-two others who have been divided into teams on a further eleven yachts (for the whole eight legs of the race). Each team comprises of twenty-two men and women from all corners of the world.

The fleet of twelve identically matched 70-foot sea faring racing yachts will be his home for 11 months, with a grueling 4 hour on, four hours off watch and will take him through some of the most treacherous waters in the world.

The one constant is his joy of being on the water, preferably the salty variety. With his children grown up and becoming increasingly independent, he is taking this opportunity to achieve a lifetime ambition, which he hopes that will also prove extremely worthwhile through his fundraising initiative.

Jon through his race is supporting two charities ALD Life and The Lily Foundation, “Having spent a lot of time over the years working with children through my keen rugby interest, helping raise funds for both disadvantaged children and those with rare, debilitating diseases is close to my heart.”

Overall Jon would like to raise £20,000 for both charities (£10,000 each), and with less than a month to go before his departure, he is preparing for what will be one of the most challenging events in his life.

Supporters can follow Jon’s progress at his JustGiving page or on his blog here.

ALD Life (charity registration number: 1106008) is the only patient support organisation in the UK for patients and families affected by Adrenoleukodystrophy (ALD) & Adrenomyeloneuropathy (AMN).

Every donation received helps ALD Life to support families, improve treatment, raise awareness and work closely with medical professionals.

ALD is an extremely complex and rare genetic terminal illness (incidence rate of 1:17.000) which mainly affects boys aged 4-10, but can also affect male teenagers and adult men (approximately 30% of men with AMN will develop ALD). Although less severe, some men and women with the faulty or missing ABCD1 gene develop AMN, an incurable and disabling metabolic disorder which can lead to the loss of use of their legs, incontinence and impotency.

Article by the ALD Life organization, click here to learn more.




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