Epic charity ride planned from London to Mount Etna

Road rally to Mount Etna and back supports Angelman UK

A group of three motorcycling friends will ride from Ashford to Mount Etna in Sicily and back to raise money for AngelmanUK, a charity that helps sufferers of the rare genetic condition, Angelman Syndrome. Starting on May 18 at Jack Lilley Triumph in Ashford and ending on June 2 at Burview Hall in Walton-onThames, ‘The Angelman Rally’ was created by 38-year-old Xavier Lomas after his two-year-old son Henri was diagnosed with the condition. First known as ‘Happy Puppet Syndrome’ due to the happy demeanour and stiff jerky movements it causes, it is a disorder that causes severe learning difficulties, so sufferers need 24/7 care.

“I wanted something positive to look forward to and this trip is a kind of therapy and something of a coping mechanism for me, but I thought I could raise money, too” Lomas told MCN. “We chose AngelmanUK because they support people like myself and educate people about the condition.” AngelmanUK is a small charity, that relies solely on donations. All trustees are volunteers, so 100 per cent of the money goes to those that need it. One of the group’s roles is family support, with a 24/7 helpline and email support. The rally will see the three ride Triumphs to Mt Etna, Sicily; via the Alps, Milan, Verona, Bologna, Florence, Rome, Sicily, then up Italy’s west coast, Pisa, Genoa, Monaco, Nimes, Millau, Paris, and London. The team will host a fun day at the at Burview Hall on June 2, for children

‘This trip is a kind of therapy and raises funds’ XAVIER LOMAS, ANGELMAN RALLY

with the condition and to educate people about the syndrome.

It was going to be a small fundraising effort, but Lomas and his friends Daniel Whitley and Graham Trood, were approached by a marketing company who gave the 3315-mile rally greater publicity. The trip is being filmed by The Power Station, for a documentary about Angelman Syndrome.

“It will focus on a father’s emotional journey from diagnosis to now,” says Lomas. “My supportive friends help me find my way.” The film will be aired late in 2019. Get involved at www. theangelmanrally.org

Lomas is raising money for his son’s charity Lomas’ son, Henri, has ‘Angelman Syndrome’