Today is #PurpleDay

Seizures often occur in children and adults with #leukodystrophy but not all seizures look the same.

Have you seen a seizure that didn’t look like shaking? Share this post to help spread the word.

https://alextlc.org/symptom/epilepsy-seizures/

#AlexTLC #EpilepsyAwareness

Help to raise awareness of leukodystrophy on Rare Disease Day by downloading and displaying our social media banner.

https://alextlc.org/wp-content/uploads/2026/02/RDD-FB-Banner.jpg

#AlexTLC #RareDiseaseDay #RareAware #EquityForRare

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

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

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 #WomensHistoryMonth

This month, we're celebrating some of the amazing women making an impact across the leukodystrophy community. Find out more about Dr Green and many other incredible women by following the link below:

#lgmonth/#lg" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">https://alextlc.org/news/womens-history-month/#lg

#AlexTLC

Huge thanks to everyone who got involved on #RareDiseaseDay

Your likes, comments and shares helped shine a light on #leukodystrophy

Here's the Hamilton Lab team (studying leukodystrophies using zebrafish at the University of York) wearing their colours and stripes to mark the day!

#AlexTLC

#RareDiseaseDay is finally here! What better way to mark the occasion than to light up our stained glass window.

https://visufund.com/alex-tlc-light-up-for-rare

Every donation helps us continue to shine a light on #leukodystrophy and support those affected 🌟💙

#AlexTLC #LightUpForRare

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

Could you join Team #AlexTLC and take on the UK’s biggest and most iconic marathon?

The world-renowned #LondonMarathon route takes you past many of London’s most famous landmarks including Tower Bridge, the London Eye, Big Ben and Buckingham Palace 👑

alextlc.org/fundraising-event/london-marathon/

In this video, our Founder and CEO, Sara, shares why Alex TLC's Community Weekends are so important to the people we support.

Please consider supporting our Community Weekend Appeal so we can continue providing these vital events in the future:

www.justgiving.com/campaign/alextlc-cw

#AlexTLC

Teemill are offering free UK Shipping this weekend! No code is needed.

https://alex-tlc.teemill.com/

#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #LeukodystrophyAwareness #Teemill #CyberWeek

www.lulu.com/spotlight/co... I wrote a book Cosmic Poetry from the Sin Bin... burbling from the tatters - you can buy it here. The profits go to charity AlexTLC

It's National Employee Appreciation Day!

We'd like to take this opportunity to thank all of our amazing Alex TLC staff for their hard work and dedication.

#AlexTLC #EmployeeAppreciation

It's #InternationalEpilepsyDay

Epilepsy is often a secondary condition to leukodystrophy.

To find out more, visit our website: https://alextlc.org/symptom/epilepsy-seizures/

#AlexTLC #Leukodystrophy #Epilepsy

An important message from our CEO, Sara.

Please share our posts, sign up to #easyfundraising and donate if you can. Small acts really add up.

https://linktr.ee/Alextlccharity

#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy

Thank you all for lighting up our #RareDiseaseDay stained glass window!

You have raised an incredible £340 this year (£1,161 over the past 4 years)!

https://visufund.com/alex-tlc-light-up-for-rare

#AlexTLC #LightUpForRare #leukodystrophy

Anyone affected by leukodystrophy can attend our Community Weekend for free.

Please donate and help us to continue to bring the leukodystrophy community together each year.

www.justgiving.com/campaign/ale...

#alextlc #helptocope #helptohope #leukodystrophy #communityweekend #appeal

Bookings for our Community Weekend 2026 are open
https://alextlc.org/how-we-support-you/peer-support/community-weekends/community-weekend-2026/
Professional, researcher, patient advocate or pharmaceutical representative and would like to attend? Email info@alextlc.org
#AlexTLC #CommunityWeekend2026

Hannah Geldart is the IWMD Children’s Nurse Specialist for Leeds & Manchester - she uses her experience in Neuroscience Nursing to provide clinical knowledge and psychosocial support
https://alextlc.org/nhs-england-iwmd-leukodystrophy-professionals/
#IWMDService #Leukodystrophy #NHSEngland #AlexTLC

As #WomensHistoryMonth draws to a close, we're giving a special shout out to Laura Rodriguez, Director of Biology at Minoryx Therapeutics. Minoryx is currently trialling Leriglitazone in adult male subjects with cerebral adrenoleukodystrophy.

#lristory-month/#lr" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky">alextlc.org/news/womens-history-month/#lr

#AlexTLC

Thinking of everyone taking on the Glasgow #KiltWalk for #AlexTLC tomorrow in memory of Christopher Keenan.

Christopher’s Mum Monica, Dad Andy, and Sister Ashleigh are walking with Andrew, Karen, William, and their dogs.

www.justgiving.com/page/kiltwalkforchris

Good luck everyone 💙

Today we are remembering Alexander Laurie Hunt, 12th May 1993 – 19th December 2012 💙

We are also sending thoughts and hugs to Alex's Mum, our wonderful CEO Sara, and his brother Ayden 💖

#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy

Today is #InternationalNeonatalScreeningDay 👣🩸

Early diagnosis changes lives - We will continue with our commitment to work towards ALD and MLD being added to the list of conditions screened for at birth.

#AlexTLC #Leukodystrophy #INSD2026 #NewbornScreening #ScreenOurBoys

It's #VolunteersWeek

Today we're saying a big thank you to Chris, who has been our Corporate Fundraising Volunteer since November. Chris has already made a big impact by securing £900 in corporate donations!

#AlexTLC #HelpToCope #HelpToHope #Volunteer