Arthurs Quest

SLC6A1connect symposium 2023
2023-11-30 | Kent
Save The Date
Please save the date for the 2023 SLC6A1 Connect International Symposium. The symposium will be held on November 30th, 2023 in Orlando, Florida.
This year, we plan to have two different tracks. One is aimed purely at scientists and doctors while the other is designed solely for parents. Scientists, doctors and resources will be presenting curated material that will help educate us as a community and allow ample time for questions.
Would you like to help? Do you have a talent? Reach out! If you have a talent, we have the need.
We have MANY sponsorship slots available. Please pass this document along!
Videos from the 2023 SLC6A1 Symposium Scientific Track now available:
https://slc6a1connect.org/2024/01/28/2023-slc6a1-connect-symposium-science-track-videos-now-available/

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RexPo - RePo4EU
2023-10-25 - 2023-10-26 | Elite Palace Hotel, Sankt Eriksgatan 115, 113 43, Stockholm, Sweden
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The REPO4EU Horizon Europe project currently building a European/Global Platform and Infrastructure for Drug Repurposing
will host its 2nd International Conference on Systems Medicine, Artificial Intelligence and Drug Repurposing and you cannot miss it!
Building on the success of our first conference last year in the city of Maastricht, we are delighted to present the next step in this journey…
RExPO23 is the second installment in the RExPO annual conference series and will take place in Stockholm, Sweden, from October 25-26
THIS IS REXPO23

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4th Annual Markets and Markets Orphan Drugs and Rare Diseases Conference
2023-10-09 - 2023-10-10 | IBIS London Earls Court Hotel & ILEC Conference Centre, 47 Lillie Rd, London, SW6 1UD, United Kingdom
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With the enforcement of the 1983 Orphan Drug Act (ODA), manufacturers are obliged to scale production to treat rare/orphan diseases, leading to a drastic advancement in the landscape of orphan drugs. Novel therapies aimed at treating these uncommon diseases are paramount to fulfilling the unmet needs of patients.

The present-day challenges, including constrained resources, disease severity, limited patient access, and a lack of available knowledge in rare diseases, necessitate the discovery of innovative solutions to hasten orphan drug development.
The 4th Annual MarketsandMarkets Orphan Drugs and Rare Diseases Conference, to be held on October 9–10 at Ibis London Earls Court Hotel & ILEC Conference Centre, aims to provide a valuable and broad platform to discuss recent advances in the development of life-saving therapies, critical issues, and strategies to enhance orphan drug development in near future. The conference will bring together scientists, researchers, entrepreneurs, academicians, medical officials, and technologists across the globe to discuss the newest findings in the areas of rare diseases and orphan drugs, helping to shape present and upcoming challenges in drug analysis. It gives participants the chance to interact with industry peers and participate in this scientific conference while staying informed about the most recent developments in the study of rare diseases.

events.marketsandmarkets.com

International League Against Epilepsy congress 2023
2023-09-02 - 2023-09-06 | The Convention Centre Dublin, Spencer Dock, North Wall Quay, Dublin, Ireland
SLC6A1 patient advocacy groups from around the world united in Dublin for the International League Against Epilepsy congress 2023.
What a truly wonderful and exciting opportunity to meet some of our SLC6A1 family to speak with scientists, doctors, and researchers already doing wonderful work to help our cause, but also to bring them together with a wider network of specialists, to inform, to educate and to raise awareness. Meeting with Katty Kang from Vanderbilt who discovered the impact of phenylbutyrate on the slc6a1 pathway was particularly exciting. What an amazing human being. Better treatments are coming. Gene therapy is coming. GAT1 is firmly on the map! @arthursquest #slc6a1connectuk www.arthursquest.org #slc6a1 #slc6a1connect #slc6a1connetitalia #slc6a1connectbelgie #meesterbrein #slc6a1connectspain

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Model Railway Tonbridge
2023-08-05 | Tonbridge Miniture Railway, The Old Power Station, 26 The Slade, Tonbridge, TN9 1HR, United Kingdom
Model Railway Tonbridge – 5th August 2023 – The miniature railway in the Town of Tonbridge, which is a favourite attraction of Arthur and his sister as they ride around pointing at all the squirrels as they go, is donating some profits from this days sales.
A huge thank you for your support!

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Classic Car Ride Out
2023-07-23 | Kent
Classic Car Ride Out – A mayoral event raising money and the profile of AQ. This is a private event taking place on Sunday 21st July 2023.
A big thank you to all the classic car lovers for taking part and supporting us!

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BIGBLUE - 3 Peak Challenge, 24th September 2022.
2022-09-24 | Three Peaks Challenge Yorkshire, PH33 6ST, United Kingdom
A huge thankyou to the team at BIGBLUE recruitment consultancy for supporting our charity by climbing the 3 Peak Challenge in 24hours. It was a gruelling event for them, but they all did brilliantly, despite the obvious physical punishment. The team raised over £4,000 towards our research and development.

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Hampton Court Half Marathon
2022-03-20 09:00 - 17:30 UTC | Hampton Court Palace, Hampton Ct Way, East Molesey, KT8 9AU
‘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?
Arthur 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.
Parents 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.
So come out and support the team, donate to this amazing cause, warm the runners up with your kindness and your generosity.
It will be appreciated more than you could know’.
Want to know more? Visit www.arthursquest.org and www.slc6a1connect.org

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£1 Cure Challenge
2020-11-01 - 2021-11-30 | Kent
A national campaign to cure children with rare neurological condition SLC6A1.
DONATE JUST £1 TODAY NOVEMBER IS NATIONAL EPILEPSY MONTH.
SLC6A1 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.

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Tonbridge Half Marathon Day
2020-07-31, 2019-10-06 | Judd School, Brook Street, Tonbridge, Kent, TN9 2PW, United Kingdom
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.
The 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.
Arthur 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.
The 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.
A huge thank you to the lovelies that ran for us today.

Fosse Bank Association Quiz Night - ON HOLD
2020-06-03 19:00 - 22:30 | Fossse Bank School, Noble Tree Rd, Hildenborough, Tonbridge, TN11 8ND, United Kingdom
Apologies, but this event is currently on hold due to Covid-19. As soon as we have more information, we’ll ket you know.

Pounds for Pedals
2020-06-01 00:00 - 2020-09-30 00:00 | Kent
Support Arthur’s 4 mile journey on his new balance bike to raise money for research to cure his disease.
Thanks for visiting my fundraising page!

Please 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!

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Fosse Bank Association Quiz Night
2020-05-06 19:00 - 22:30 | Fossse Bank School, Noble Tree Rd, Hildenborough, Tonbridge, TN11 8ND, United Kingdom
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.

Fosse Bank School 'Own Clothes day'
2020-02-28 | Fossse Bank School, Noble Tree Rd, Hildenborough, Tonbridge, TN11 8ND, United Kingdom
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.
