More people than ever before need our support, and we need your help to continue providing one to one sessions, online community meetings, counselling and our grant programme for families affected by #leukodystrophy

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

#AlexTLC #LightUpTheSky

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