STAFF at a Wirral hotel took part in a virtual bike ride in memory of an inspirational woman who died from a rare disorder.
The event, at Hillbark Hotel in Frankby on Thursday, raised funds and awareness in memory of Amy Garton-Hughes, from Wallasey, who passed away on New Year's Day, 2020.
The 28-year-old had Cockayne Syndrome, a rare disorder which causes premature ageing and was the inspiration behind campaign group Amy and Friends Cockayne Syndrome and Trichothiodystrophy Support.
Amy’s story was followed by the Wirral Globe, as readers learned about her journey to Boston, USA, to get a diagnosis of Cockayne Syndrome, meeting her soul mate Nick, from Texas, and her parents starting a registered charity, 'Amy and Friends' to help other children and young people with DNA repair disorders.
Last Thursday (June 13), Amy's mum Jayne and sister Laura cycled 185 miles in three days, stopping in Belgium and then continuing on through to Eindhoven. They were joined by business people and parents and scientists from across the Northwest.
Whilst they are travelling through three countries, back in the UK they were joined by a team from Hillbark Hotel n Frankby who were cycling the same distance virtually.
Amanda Jane Arends, manager of Hillbark Hotel & Spa, told the Globe: "I’m really proud of my team for helping raise awareness for this fantastic charity and we will continue to support Jayne Hughes".
Scientists are able to gain knowledge to help towards treatments for the many issues occurring with these life limiting disorders.
Amy and Friends has also helped write many medical papers and 'continually pushing research forward'.
A Globe-backed campaign - the Help Amy Appeal - raised more than £30,000 for Amy and other CS sufferers in 2007.
Jayne told the Globe: "I am so very grateful to everyone who took part in the cycle and all who continue to help children and families with Amy’s illness.
"I want to thank them for all their fantastic teamwork, fabulous atmosphere, amazing support they have all showed us.
"It really means a lot to us the charity and to our families. We would like to thank every one of those people who have supported/sponsored us this week.
"I’m sure our Amy girl would be so very proud.
"I’m sure our Amy girl would be so very proud.
"Amy’s dream was to help children and families like hers and her legacy continues.
"We arrived back in the UK earlier this month after being asked to join with the Marie Sklodowska-Curie Actions Rotterdam research consortium in Erasmus University, this included scientists from Netherlands, Italy, Belgium, UK and Norway and is primarily to join forces with scientists to coordinate research focus and to also train the next generation of phd students looking to work in the field of rare disorders.
"This is at the early stages of planning the programme which should go live in autumn 2025.
"Scientists are looking for links between rare and common disorders - mainly neurodegenerative illnesses such as Alzheimer’s and Parkinson disease and research possible interventions - if they find common causes between certain neurodegenerative symptoms in both rare and more common illnesses this creates more interest globally and potentially helps more quickly with therapies for rarer disorders."
To support the team at Hillbark on its ongoing campaign after the virtual cycle ride for the appeal, go to: https://www.justgiving.com/page/hillbark-hotel-1716909411180
For more information on Amy and Friends, go to: https://amyandfriends.org/
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