Alex The Leukodystrophy Charity (Alex TLC)

Would you like to raise money to support Alex TLC, but don’t know where to start? Check out our A-Z of Fundraising for inspiration! https://lnkd.in/e28SAyuE #alextlc #helptocope #helptohope #fundraising

Genetic Alliance UK is looking for a Treasurer and up to three Trustees to join our enthusiastic and committed Board during 2025, as part of our Trust Board succession planning The Treasurer and Trustees play a key role in leading and supporting the charity: 🔵 Attend four Board meetings each year 🔵 Attend one in-person Board Strategy Away Day each year 🔵 Attend the one-hour Annual General Meeting in autumn each year 🔵 Consider joining one of our sub-committees, with up to four online meetings each year To find out more: https://lnkd.in/edv3mPpc #raredisease

The current prize pot for our November 50/50 Cash Draw is £117.50 and it increases with every new entry! Imagine having that little bit extra to help kickstart your Christmas shopping. You can enter the monthly draw for a whole year from just £12, or subscribe from just £2 a month for 2 entries. Sign up now and help fund our vital work supporting anyone affected by #leukodystrophy https://lnkd.in/e8rADHMU #alextlc #cashdraw #charitydraw #cashprize #win

With just two months to go until Christmas, what better time is there to sign up to a festive skydive? Our partners, Skyline Events, are offering Christmas themed skydives throughout December, with locations across the UK! Find out more: https://lnkd.in/eqWubjup #alextlc #helptocope #helptohope #leukodystrophy #skydive #skydiving #festiveskydive #christmasfundraising

We are pleased to announce that we have recently been Cyber Essentials Certified This means we are making sure our systems and your data is as secure as possible, as it is of utmost importance to us. #alextlc #helptocope #helptohope #cyberessentials

Today is Young Onset Dementia Awareness Day. Dementia is referred to as young onset when symptoms begin before the age of 65. Some leukodystrophies can cause dementia or dementia-like symptoms, often earlier in life. https://lnkd.in/echNcMsz #youngonsetdementia #youngonsetdementiaawareness #yoda #alextlc #helptocope #helptohope #leukodystrophy

Please join us in saying a big "Thank you!" to the Devil's Dyke Morris Men for donating a generous £500 to Alex TLC! This was kindly arranged through Steve (pictured back row, fifth from the right), whose great nephew, Albie has a diagnosis of Aicardi Goutieres Syndrome (AGS). The Devil's Dyke Morris Men donate to several charities with the money collected from their performances, and we are so grateful to them for choosing to support Alex TLC 💙 #alextlc #helptocope #helptohope #leukodystrophy

EURORDIS-Rare Diseases Europe has welcome the new launch of European Rare Diseases Research Alliance (ERDERA) It is the largest co-funded partnership ever established in the field of rare disease research and innovation. With an aim to unify Europe’s fragmented research efforts under a single framework to accelerate the development of diagnostics and therapies. Genetic Alliance UK were part of the development committee contributing their ideas to it's development Find out more about ERDERA, including their mission, plan and how to get involved by visiting: https://lnkd.in/eZxbtaaf #raredisease

Enjoy a nice slice of cake with your mates, and help us to continue supporting those living with leukodystrophy. Host your own SimilariTea Party! https://lnkd.in/eDDnpyXT #alextlc #helptohope #helptocope #leukodystrophy #genetics #tea #coffeemorning #bakesale #fundraisingideas

Prism Polish UK re-released their 'Rise Today' nail polish as a charity polish for Alex TLC last month. As well as raising awareness of our charity, sales from the polish generated £28 in funds towards our vital work. Thank you, Prism Polish! 💙 #alextlc #helptocope #helptohope #prismpolish #prismpolishuk #charitypolish