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PRODID:-//Arthurs Quest - ECPv6.15.17.1//NONSGML v1.0//EN
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X-WR-CALNAME:Arthurs Quest
X-ORIGINAL-URL:https://slc6a1connectuk-aq.org
X-WR-CALDESC:Events for Arthurs Quest
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X-PUBLISHED-TTL:PT1H
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DTSTART:20180101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220320T090000
DTEND;TZID=UTC:20220320T173000
DTSTAMP:20260428T173915
CREATED:20211222T150312Z
LAST-MODIFIED:20211222T165420Z
UID:535-1647766800-1647797400@slc6a1connectuk-aq.org
SUMMARY:Hampton Court Half Marathon
DESCRIPTION:‘Ten amazing humans have signed up to complete the Hampton Court half marathon on March 20th 2022 in support of Arthur’s Quest\, most of whom are new to running. This means a merciless training regime throughout the depths of UK winter\, blisters\, chapped lips\, frosty fingers and windburned cheeks. Why are they putting themselves through all that? \nArthur is 5 years old and suffers from a rare neurological condition known only by the gene code SLC6A1. This condition causes a rare form of epilepsy which is extremely hard to treat\, autism\, muscle weakness\, learning disability\, speech and language delay/difficulty\, behavioural changes and regression and the children require speech therapy\, Physio\, Occupational Therapy\, specialist school provision and endless appointments. The genetic change was found in 2015 and Arthur was diagnosed in 2018. Arthur’s parents tested negative for the gene\, and despite that\, his baby sister was diagnosed age 1 in 2020. It has taken a year of falling over from drop seizures\, facial injuries\, a lost tooth and several medication changes to finally get some control of her seizures with a cocktail of anti epileptic drugs. There are currently hundreds of children diagnosed across the globe with this condition\, and more get diagnosed every day. Scientists and doctors have taken interest in the speed at which people are being diagnosed\, and the spectrum of disabilities experienced by the sufferers. The studies done on the condition to date estimate the condition to affect 1:3500 births\, and is the 10th cause of autism and 6th cause of epilepsy. \nParents have rallied together and in the last 4 years\, they have work tirelessly to raise money to fund research for better treatments and a cure\, and it is working. Data collection and research to treat and cure this disease is taking place at UT Southwestern\, University of Pennsylvania\, Uplifting Athletes\, Gladstone institutes\, University of California at San Francisco\, Collaborations pharmaceuticles\, Cyclia\, University of Colorado Boulder\, and Vanderbilt University. We currently have 12 children on a drug trial in the US and Europe using a repurposing study for a drug already taken by children for a completely different condition\, so far the results are good. These children and young people and their families are suffering on a daily basis. Just when they think things are improving\, the children regress and the work starts all over again. A cure cannot come soon enough! This is not shooting in the dark\, the science is already happening\, the contacts have already been made\, but what they do need is money to keep it going\, to reach the end goal\, before irreversible neurological damage sets in. \nSo come out and support the team\, donate to this amazing cause\, warm the runners up with your kindness and your generosity. \nIt will be appreciated more than you could know’. \nWant to know more? Visit www.arthursquest.org and www.slc6a1connect.org \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/hampton-court-half-marathon/
LOCATION:Hampton Court Palace\, Hampton Ct Way\, East Molesey\, KT8 9AU
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2021/12/Hamton-half-marathon-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201101
DTEND;VALUE=DATE:20211201
DTSTAMP:20260428T173915
CREATED:20201019T153308Z
LAST-MODIFIED:20201102T121724Z
UID:443-1604188800-1638316799@slc6a1connectuk-aq.org
SUMMARY:£1 Cure Challenge
DESCRIPTION:A national campaign to cure children with rare neurological condition SLC6A1. \nDONATE JUST £1 TODAY NOVEMBER IS NATIONAL EPILEPSY MONTH. \nSLC6A1 IS A LEADING CAUSE OF EPILEPSY BY GENETIC CHANGE. LET’S MARK THE EVENT AND FUND THE RESEARCH TO CURE THIS CHILDHOOD DISEASE! HELP MAKE THIS EVENT A NATIONAL SUCCESS BY DONATING £1 TODAY AND SHARING ON SOCIAL MEDIA AND WITH YOUR CONTACTS. \n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/one-pound-cure-challenge/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/11/1-pound-cure-challenge.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200731
DTEND;VALUE=DATE:20200801
DTSTAMP:20260428T173915
CREATED:20200622T111438Z
LAST-MODIFIED:20201021T163112Z
UID:233-1596153600-1596239999@slc6a1connectuk-aq.org
SUMMARY:Tonbridge Half Marathon Day
DESCRIPTION:Today was Tonbridge half marathon day and it started off tipping it down\, it was not looking good\, but just in time the sun came out and the rain stopped. \nThe team were in good spirits despite some nerves for the novices. The hills were tough\, but they all did so great\, finishing between 1hr 57 and 2hr 29. \nArthur watched with a heavily pregnant Mummy (whose waters broke the next day!) and friends on the sideline\, but was able to fit in a quick game of golf once the runners were out of sight. A truly great result. Celebrations were had post run at the Poacher & Partridge. \nThe team raised to date £2\,400 for arthursquest.org all of which went to research for the gene therapy needed to cure Arthur’s rare disorder at UT Southwestern. \nA huge thank you to the lovelies that ran for us today.
URL:https://slc6a1connectuk-aq.org/event/tonbridge-half-marathon-day-2/
LOCATION:Judd School\, Brook Street\, Tonbridge\, Kent\, TN9 2PW\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/06/Arthurs_Quest-marathon_finish-e1592170429363.jpeg
ORGANIZER;CN="Tonbridge Half Marathon Organising Committee":MAILTO:enquiries@tonbridgehalfmarathon.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200603T190000
DTEND;TZID=UTC:20200603T223000
DTSTAMP:20260428T173915
CREATED:20200616T140245Z
LAST-MODIFIED:20201021T162853Z
UID:101-1591210800-1591223400@slc6a1connectuk-aq.org
SUMMARY:Fosse Bank Association Quiz Night - ON HOLD
DESCRIPTION:Apologies\, but this event is currently on hold due to Covid-19. As soon as we have more information\, we’ll ket you know.
URL:https://slc6a1connectuk-aq.org/event/fosse-bank-association-quiz-night-on-hold/
LOCATION:Fossse Bank School\, Noble Tree Rd\, Hildenborough\, Tonbridge\, TN11 8ND\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/10/Quiz_night-Arthurs_Quest2.jpg
ORGANIZER;CN="Fosse Bank Association":MAILTO:fosseassociation@fossebankschool.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200601T000000
DTEND;TZID=UTC:20200930T000000
DTSTAMP:20260428T173915
CREATED:20200727T161613Z
LAST-MODIFIED:20201021T162751Z
UID:383-1590969600-1601424000@slc6a1connectuk-aq.org
SUMMARY:Pounds for Pedals
DESCRIPTION:Support Arthur’s 4 mile journey on his new balance bike to raise money for research to cure his disease.\nThanks for visiting my fundraising page! \n\n\nPlease help me support SLC6A1 Connect by making a donation through my page. The process is fast\, easy and secure. Arthur suffers from this disease and struggles with epilepsy\, movement disorder and developmental delay. It will be a wonderful day when Arthur completes this challenge. Thanks so much for your support… and please don’t forget to send this page to any friends you think might be interested in donating! \n\n\n\n\nDONATE
URL:https://slc6a1connectuk-aq.org/event/pounds-for-pedals-or-arthurs-balance-steps/
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/07/Arthurs-Quest_Bike_Ride_Fund-Raiser2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200506T190000
DTEND;TZID=UTC:20200506T223000
DTSTAMP:20260428T173915
CREATED:20200615T125021Z
LAST-MODIFIED:20200630T154226Z
UID:98-1588791600-1588804200@slc6a1connectuk-aq.org
SUMMARY:Fosse Bank Association Quiz Night
DESCRIPTION:Wow – thank you so much to the Fosse Association who have raised £210 for Arthur’s Quest at their fantastic quiz night – a great night was had by all and the kind donations of parents and friends will be used to further research into gene replacement therapy for our children.
URL:https://slc6a1connectuk-aq.org/event/fosse-bank-association-quiz-night/
LOCATION:Fossse Bank School\, Noble Tree Rd\, Hildenborough\, Tonbridge\, TN11 8ND\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/06/Quiz_night-Arthurs_Quest.jpg
ORGANIZER;CN="Fosse Bank Association":MAILTO:fosseassociation@fossebankschool.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200228
DTEND;VALUE=DATE:20200229
DTSTAMP:20260428T173915
CREATED:20200615T124552Z
LAST-MODIFIED:20200630T154750Z
UID:93-1582848000-1582934399@slc6a1connectuk-aq.org
SUMMARY:Fosse Bank School 'Own Clothes day'
DESCRIPTION:A huge thank you to Fosse Bank School who raised £166 for Arthur’s Quest on their ‘own clothes day’. We appreciate their support as always.
URL:https://slc6a1connectuk-aq.org/event/fosse-bank-school-own-clothes-day/
LOCATION:Fossse Bank School\, Noble Tree Rd\, Hildenborough\, Tonbridge\, TN11 8ND\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/06/fosse-bank-school.jpg
ORGANIZER;CN="Fosse Bank School":MAILTO:office@fossebankschool.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191006
DTEND;VALUE=DATE:20191007
DTSTAMP:20260428T173915
CREATED:20200614T213914Z
LAST-MODIFIED:20200619T135345Z
UID:83-1570320000-1570406399@slc6a1connectuk-aq.org
SUMMARY:Tonbridge Half Marathon Day
DESCRIPTION:Today was Tonbridge half marathon day and it started off tipping it down\, it was not looking good\, but just in time the sun came out and the rain stopped. \nThe team were in good spirits despite some nerves for the novices. The hills were tough\, but they all did so great\, finishing between 1hr 57 and 2hr 29. \nArthur watched with a heavily pregnant Mummy (whose waters broke the next day!) and friends on the sideline\, but was able to fit in a quick game of golf once the runners were out of sight. A truly great result. Celebrations were had post run at the Poacher & Partridge. \nThe team raised to date £2\,400 for arthursquest.org all of which went to research for the gene therapy needed to cure Arthur’s rare disorder at UT Southwestern. \nA huge thank you to the lovelies that ran for us today.
URL:https://slc6a1connectuk-aq.org/event/tonbridge-half-marathon-day/
LOCATION:Judd School\, Brook Street\, Tonbridge\, Kent\, TN9 2PW\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://slc6a1connectuk-aq.org/wp-content/uploads/2020/06/Arthurs_Quest-marathon_finish-e1592170429363.jpeg
ORGANIZER;CN="Tonbridge Half Marathon Organising Committee":MAILTO:enquiries@tonbridgehalfmarathon.co.uk
END:VEVENT
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