End AxD are offering two opportunities to shape future of research and treatment 💬 🔵 Externally - Led PFDD meeting today: https://www.endaxd.org/endaxdel-pfdd 🔵 AxD Voice of the Patient Survey: https://docs.google.com/forms/d/e/1FAIpQLScVDfP7qHIl4Qn9Gyx3c-FhBxEdixmMpn0PbOeVSatpNS-g8w/viewform

It's #InternationalVolunteerDay! We'd like to say a huge thank you to all the volunteers who dedicate their spare time to Alex TLC - we couldn't do what we do without you! If you'd like to volunteer for us, visit our website: https://alextlc.org/support-us/volunteer/#InternationalVolunteerDay #AlexTLC #Volunteer

Exciting news if you missed last week's Teemill offer. This weekend (Thursday until Sunday) #Teemill are offering free UK Shipping! No code is needed. It's the perfect opportunity to get those awareness raising Christmas pressies in! 🎅🎁💙 https://alex-tlc.teemill.com/#Teemill #LeukodystrophyAwareness

Our lucky 50/50 Cash Draw winner for December has won £187.50, with number 240! Sign up now to be in with a chance of winning in the January draw (wouldn't that be helpful!) 💰 https://alextlc.org/donate/5050-cash-draw/ #AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #CashPrize #Win

We have 3 places left for the Falkirk Wheel Abseil! You’ll descend 100ft from the top of the world’s only rotating boat lift! All we need from you is a £20 registration fee and minimum fundraising target of £150. Find out more: https://alextlc.org/fundraising-event/falkirk-wheel-abseil/

It's the International Day of Persons with Disabilities. We will continue to advocate until all those living with leukodystrophy get the support and treatment they deserve. #AlexTLC #HelpToHope #HelpToCope #Leukodystrophy #RareDisease #IDPD

If you purchase our eCards you can: 😊 Receive 100 eCards that you can send anytime. 📬 Send by email, WhatsApp and Messenger. 💙 Help fund our vital work. https://www.dontsendmeacard.com/ecards/charities/alex-the-leukodystrophy-charity/christmas ‍ #AlexTLC #DontSendMeACard #ChristmasCountdown

It's National Grief Awareness Week. Our counsellor, Mel, has 17 years of experience supporting people through life’s challenges, including grief and loss. Find out more: https://ow.ly/wI1X50XzWq7 #alextlc #GriefAwareness #SupportingGrief #YouAreNotAlone #GriefSupport

Light up the sky to help us continue to provide vital support to those impacted by the devastating effects of leukodystrophy, like little Nico and his family 💙 https://visufund.com/light-up-the-sky #AlexTLC #HelpToCope #HelpToHope #LightUpTheSky

You could open the door to a £1,000 donation for Alex TLC! Countdown to Christmas with #easyfundraising's Advent Calendar, and we could win BIG! https://www.easyfundraising.org.uk/causes/alextlc/?utm_campaign=pmc&utm_source=facebook&utm_medium=social&utm_content=adventcalendar-fb1

This festive season, we’re asking you to #LightUpTheSky with hope. More people than ever before need our support, and we need your help to continue providing it. ✨ Please donate, share, and help us keep the light of hope burning bright: https://visufund.com/light-up-the-sky#LightUpTheSky #AlexTLC

Our November News Round-Up is out today 📩 We are sharing about conferences we've attended, our light up the sky campaign, joining the IWMD registry and gift vouchers for our 50/50 draw 💙 Join our mailing list: https://alextlc.org/newsletter-sign-up/ #AlexTLC #Leukodystrophy #HelpToCope #HelpToHope

You have until midnight tonight to get 10% off our Teemill shop and FREE UK delivery with code: TAKE10 https://alex-tlc.teemill.com/ Get your awareness raising Christmas pressies now! 💙🎁 #AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #LeukodystrophyAwareness #Teemill #BlackFriday

#MovementForGood are giving away a share of £120,000 to 120 charities throughout December 🎁 Just go to movementforgood.com#MovementForGoodand search for Alex, The Leukodystrophy Charity as your chosen charity. If you have already nominated us this year, your vote still counts!💙 #AlexTLC

Our November Research Summary is available🔬📃 To view: https://alextlc.org/research/research-summary-november-2025/ Database of previous research summaries: https://alextlc.org/research-and-projects/our-research-summaries/ Sign up to our mailing list: https://alextlc.org/newsletter-sign-up/

Feeling bored? Stop scrolling and take on the #Webmart Christmas Game to win £1000 for #AlexTLC! It's easy, just hop the tiny Santa over reindeers and Christmas trees to reach your highest possible score, and then enter your details at the bottom 🎅 🦌🎄 https://www.webmartuk.com/christmas-game/#Webmart#AlexTLC

If you’re shopping the Black Friday and Cyber Monday sales, make sure you use #easyfundraising. What's more if you register to support us on the app in November with their Free £2 App-eal, we'll get a bonus £2! https://www.easyfundraising.org.uk/easyfundraising-app

Looking for a stocking filler that makes a difference? Purchase an eGift voucher for just £12 for one year's entry into our 50/50 #CashDraw, and your loved one can be in the with chance of winning a cash prize every month of 2026! https://alextlc.org/donate/5050-cash-draw/#voucher#CashDraw

Don't forget to watch the presentations from our Community Weekend 2025 on our YouTube channel 💻 We have created a playlist with all of the recorded presentations from the event: https://www.youtube.com/playlist?list=PLjPDnG-7mcNWPLxc3U7troITw2o2D6rAE #AlexTLC #Leukodystrophy #CommunityWeekend2025

It's #WorldChildrensDay We'd like to take this opportunity to celebrate all the amazing children in our Alex TLC community 💙 #AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #CareAboutRare

ALD mum, Ruth, has generously donated some copies of her children's book to support our work 💙 The book is inspired by her son, Ruairí, and is suitable for all. It's just £12 with free P&P. https://alextlc.org/shop/ Thank you, Ruth! #AlexTLC #Leukodystrophy #ChildrensBook #Fundraising

🎨 Calling all creatives - big and small! You have until next Monday 24th November to submit your festive #eCard designs! ✨ A selection of designs will feature on our DontSendMeACard page at the start of December! Find out more 👇 alextlc.org/get-involved/festive-ecard-designs/#eCard

Huge congrats to Emma (pictured right) who won £183 in our November 50/50 Cash Draw! 💙 Sign up now to avoiding missing out on the December draw 🎅 https://alextlc.org/donate/5050-cash-draw/ #AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #Win

The NHSE IWMD Registry is an online clinical database that contains information about people with IWMDs or leukodystrophies. To find out more including how to join: https://alextlc.org/condition-management/nhs-patient-service-registry/#IWMDregistry#IWMDregistry #AlexTLC #Leukodystrophy #IWMD

Huge thanks to everyone who's signed up to be a regular donor. We have increased our monthly donations from 26 to 43! 🎉 Could you help us hit 100? Sign up here: https://alextlc.org/help-us-hit-100/ #AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #HelpUsHit100

Today our CEO, Sara Hunt, is attending the "100 Years of Metachromatic Leukodystrophy: From Discovery to Cure" conference in Tubingen, Germany MLD was first described in Tubingen 100 years ago today. Sara will be speaking about our experience developing a leukodystrophy patient journey 💙

Please join us in saying a huge thank you to the very brave Kate and Bryony. They recently took on a wing walk to raise funds for #AlexTLC in support of Franklin, who has ALD 💙 They raised an incredible £1,707 with their efforts! 🛩️ https://www.justgiving.com/team/kate-bryony-1#AlexTLC

It's Genetic Counsellor Awareness Day Genetic counsellors work with patients and families, offering genetic/genomic information and support, allowing them to make health decisions. Find out more by watching Dr James Poulter's presentation: https://www.youtube.com/watch?v=XFxxxvRhy8Q #AlexTLC

Don't Scrap it, donate it! Charity Car UK take the hassle out of getting rid of your car and they pass the value to us. Find out more: www.charitycar.co.uk/alex-tlc #AlexTLC #HelpToCope #HelpToHope #CharityCar

We are here to support you on your leukodystrophy journey 💙 Our team is here to provide information and advice about leukodystrophy. And our counsellor, Mel, to provide counselling sessions and wellbeing calls Need support? Email [email protected] 📩 #AlexTLC #Leukodystrophy #HelpToCope #HelpToHope

Rare Revolution are collecting insights about the quality of life of people living with rare conditions. Complete their survey to have your say: https://docs.google.com/forms/d/e/1FAIpQLSfORXTFpKfG000eVRnDPjCAspQqMBmeKUevnt7Y-d5PrCTNzw/viewform #AlexTLC #Leukodystrophy #Rare #RareDisease

It's #RemembranceSunday Today we remember the service and sacrifice of the Armed Forces, and their families, from Britain and the Commonwealth, the vital role played by the emergency services and those who have lost their lives as a result of conflict or terrorism.

Every fundraiser has a story 💙 Meet the amazing people who go above and beyond to support Alex TLC, and discover what drives their mission on our Supporter Stories page: https://alextlc.org/fundraise/supporter-stories/ #AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #Fundraising

Do you know someone living with a #Rare Disease or condition who inspires you? They could be friends, family members, colleagues or an keen advocate you've seen online. Nominate here: https://docs.google.com/forms/d/e/1FAIpQLScorNqkBPl5IT6xxYSrzcJG0mrTDMP4hohByzTkhK-kl9ZlYQ/viewform#Rare

ULF are holding a First Aid and CPR webinar on Sunday 9th November 7pm (UK time) to better understand adaptive first aid strategies for parents, guardians and professionals supporting children with complex health conditions To register: https://alextlc.org/news/first-aid-and-cpr-training-webinar/

Does your workplace choose a Charity of the Year? We’d love you to nominate Alex TLC to be considered 💙 To find out more about corporate opportunities, visit: https://alextlc.org/support-us/corporate-opportunities/ #AlexTLC #CharityOfTheYear #CharityPartner

It's #TrusteesWeek Trustees have overall control of a charity and are responsible for making sure it’s doing what it was set up to do. Our trustees bring a mixture of lived experience and professional skills which promote effectiveness and efficiency in all we do. #AlexTLC

It's #NationalStressAwarenessDay Dr Pujit Gandhi delivered a very helpful presentation on how to manage your mental health at our 2023 Community Weekend. Watch the presentation by clicking the link below: https://www.youtube.com/watch?v=Yr5OGRDr-uM#NationalStressAwarenessDay #AlexTLC #HelpToCope #HelpToHope

Our lucky 50/50 Cash Draw winner for November has won £183, with number 12! Sign up now to be in with a chance of winning in the December draw 💰 🎅 https://alextlc.org/donate/5050-cash-draw/ #AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #CashPrize #Win

🎨 Calling all creatives - big and small! We’re expanding our range of festive eCards and would love to feature your designs! Your design doesn’t need to be a masterpiece, just something fun and festive. alextlc.org/get-involved/festive-ecard-designs/ #AlexTLC #ECards #DontSendMeACard

It's #TrusteesWeek We're kicking off the week by saying a huge thank you to our Trustees, who all volunteer their time, knowledge and skills to make a real difference to Alex TLC 💙 Find out more about our amazing trustees: https://alextlc.org/about/trustees/#TrusteesWeek #AlexTLC #Trustees

Summary of the PET webinar 'Mitochondrial Donation: Does It Work? What Next?' 📑 To discuss recent developments in mitochondrial donation, highlighting scientific advances, ethical considerations and patient perspective 💬 https://www.progress.org.uk/mitochondrial-donation-does-it-work-what-next/

Our CEO, Sara, attend the ERN-RND annual meeting earlier this week Topics discussed included treatment eligibility panels for ALD, MLD and Krabbe, European standards of care and the JARDIN project (https://jardin-ern.eu/) 💬 Photo of attendees, including Dr Nicole Wolf and Dr Wolfgang Köhler 📸

We are very excited to launch our new Teemill shop 💙 What's more, postage and packaging is FREE this weekend! https://alex-tlc.teemill.com/ Alex TLC receives a small royalty for every item sold. #AlexTLC #Leukodystrophy #LeukodystrophyAwareness

Each month we will share information about a different type of leukodystrophy to help raise awareness 💙 Condition information: https://alextlc.org/condition/leigh-syndrome/ We support people affected by all types of leukodystrophy, email [email protected] #AlexTLC #LeighSyndrome #Leukodystrophy

It's #Halloween! We'd love to hear your plans and see your fancy dress costumes and decorations in the comments! 👻🦇 #AlexTLC #HappyHalloween #SpookySeason

You can help increase Alex TLC's entries into #easyfundraising ’s giveaway to win a £1,000 donation – every new supporter who joins is an entry! Sign up before midnight on 2nd November, it only takes two minutes: https://join.easyfundraising.org.uk/alextlc/1JYDU9/c2s/E7OVWoL0/CE942/facebook/

Our October News Round-Up is out today 📩 This month we will be sharing about our Community Weekend 2025 photos and presentations, festive campaign and much more 💙 To join our mailing list: https://alextlc.org/newsletter-sign-up/ #AlexTLC #Leukodystrophy #HelpToCope #HelpToHope

We recently received a £15,000 legacy gift 💙 an incredible act of kindness. You can write your will for free with #FreeWills and, if you wish, leave a lasting gift to help those affected by leukodystrophy. 👉 https://alextlc.org/donate/ways-you-can-donate/gifts-in-wills/#FreeWills #AlexTLC #LegacyGiving

Listen to the newest season of Beacon for Rare Diseases Rarely Heard podcast 🎧 The first episode focuses on the importance of specialist services for patients and families 💙 To listen: Apple podcasts: https://ow.ly/2zyJ50XiYLi Spotify: https://ow.ly/5K9N50XiYLj Amazon: https://ow.ly/XLUm50XiYLk