Make an end-of-year donation of what you would have spent on Christmas cards and stamps via #DontSendMeACard and send up to x100 Christmas e-cards in support of Alex TLC! 🎄❤️

https://www.dontsendmeacard.com/ecards/charities/alex-the-leukodystrophy-charity/christmas

#Christmas #Christmascards

Our Support Services Impact Report 2025 is available to view 📑

This impact report was based on the findings from our survey which gathered the views of those who have accessed support within the charity: https://alextlc.org/about/impact-reports/

#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope

This evening, as Hanukkah begins, we’re mindful that many in Jewish communities are hurting after today’s tragic events. We send our compassion to all those affected.

#HanukkahSameach

"We knew we needed to ask questions, but didn’t know what. We then found Alex TLC who are now a big part of our journey."

Can you help us to support more families like Stacey's? We provide support to help the whole family cope with the impact of leukodystrophy.

visufund.com/light-up-the-sky

Our CEO, Sara, attended a parliamentary event today in Scotland
The Childhood Dementia Awareness Raising event was held at the Scottish Parliament. The event included a presentation about 'Childhood Dementia in Scotland 2025: A Report for the Scottish Government' 💬
#ChildhoodDementia #Leukodystrophy

Pull a cracker and you could win up to £200 for Alex TLC with #easyfundraising! 🎁

The promotion runs every day until 21st December, and you'll need to sign up to support us before taking part.

https://www.easyfundraising.org.uk/prize/christmas-crackers/

#AlexTLC #HelpToCope #HelpToHope

Every donation lights up a star ✨

Join us in bringing hope to those affected by leukodystrophy.

Your gift helps fund Alex TLC’s vital Support Services – offering care, information, and a lifeline when it’s needed most.

https://visufund.com/light-up-the-sky

#LightUpTheSky #Leukodystrophy

Give the gift of winning, and help support our vital work 🎁💙

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! 💰

#voucher/#voucher" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">https://alextlc.org/donate/5050-cash-draw/#voucher

Our counsellor, Mel, has created some resources to help cope during the festive period ❄💙

To download a PDF version, including a plain printable copy, please visit: https://alextlc.org/news/coping-during-the-festive-season/

#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope

Meet the NHS England IWMD (Inherited White Matter Disorder) service professionals 👩‍⚕️👨‍⚕️

The IWMD service centres are run by a variety of different health care professionals

Find out more: https://alextlc.org/nhs-england-iwmd-leukodystrophy-professionals/

#NHSEngland #Leukodystrophy #IWMDService

Please join us in saying a huge thank you to Lilly, who raised an incredible £770 for #AlexTLC by completing #RunAltonTowers in support of her baby cousin, Noah, who lives with Aicardi-Goutières syndrome (AGS)💙

www.justgiving.com/page/lilly-thompson-6

Thank you, Lilly!

#Leukodystrophy #AGS

Ionis have received U.S. FDA Breakthrough Therapy designation for zilganersen for Alexander disease (AxD) - this is the first and only investigational medicine for this condition 💙
To find out more: https://alextlc.org/news/fda-breakthrough-therapy-designation-axd/
#AlexanderDisease #Leukodystrophy

This festive season, join us to Light Up the Sky - a campaign to raise the funds we need to sustain and grow our support services.

💙 Every contribution helps those affected find comfort, guidance, and hope when they need it most.

https://visufund.com/light-up-the-sky

#LightUpTheSky #AlexTLC

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/

#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/

#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

#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