We understand that research is a significant priority and source of hope for the leukodystrophy community 🔬👩🔬
We actively promote and support research in a number of ways: alextlc.org/resea.../research/resear...
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
Our March News Round-Up is out today 📩
This month we will be sharing about events we've been attending, your chance to have your say on supporting us and Ask our Community 💙
To join our mailing list: https://alextlc.org/newsletter-sign-up/
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
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
The FDA has accepted Ionis New Drug Application for zilganersen, the investigational treatment for Alexander Disease, for Priority Review
Community statement from Ionis: alextlc.org/news/ionis-community-sta...
#AlexanderDisease #Leukodystrophy
Our Community Weekends provide a unique opportunity for those affected by #leukodystrophy and their families to speak to specialists in the field, for guidance they may not be able to access in everyday life.
Please donate if you can:
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC
It's #WomensHistoryMonth and #HealthcareScienceWeek!
Meet Dr Noémie Hamilton.
Dr Hamilton pioneered the use of zebrafish to model white matter disorder, and is also the lead and co-founder of LEUKOLABS - the UK's first #leukodystrophy research network.
alextlc.org/news/womens-history-month/#nh
When you donate to the Alex TLC Community Weekend Appeal, you help people affected by #leukodystrophy:
💙 Connect with others who truly understand
💙 Learn from experts in the medical and research field
💙 Create lasting memories together
https://www.justgiving.com/campaign/alextlc-cw
It's #InternationalWomensDay
This year's theme highlights gender equality, so we want to draw attention to one area of female #leukodystrophy that has historically been overlooked.
Find out more: alextlc.org/practical-information-fo...
#AlexTLC
Today is #WorldBookDay 📚🌍
Books can be a brilliant tool to explore different topics 💙
We created a Children's Book to support siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD).
https://alextlc.org/campaign/children-ald-book/
#AlexTLC #Leukodystrophy
Tomorrow is #WorldBookDay! 📚✨
What better way to celebrate than by delving into the wonderful world of Fia?
Meet her fabulous friends, join the adventure and help her overcome challenges along the way.
https://alextlc.org/shop/
#AlexTLC #leukodystrophy
Are you or a loved one affected by Vanishing White Matter (VWMD)?
Resources available for individuals affected by VWMD focused on consensus recommendations for diagnosis and management of the condition: https://alextlc.org/news/vwmd-resources/
#VanishingWhiteMatterDisorder #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
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
Morbus Alexander betrifft
1 : 2,7 Millionen Einwohner
(laut einer Studie)
#RareDiseaseDay #leukodystrophy
Many people in our community have to fight for the right support to manage their condition 💙
22% of our community members asked were not referred to appropriate specialists.
https://alextlc.org/equity-for-rare#22%
#AlexTLC #RareDiseaseDay #RareAware #Leukodystrophy
21% of our community members asked have not seen or been referred to a leukodystrophy specialist ❌
A community member talks about how long her loved one had to wait to see a leukodystrophy specialist: https://alextlc.org/equity-for-rare/#poll
#AlexTLC #RareDiseaseDay #RareAware #Leukodystrophy
Many of our community have experienced a long diagnostic odyssey with 25% of our members asked having to wait over 2 years for a diagnosis ⌚
Alan's wife, Jan, had to wait over 3 years for her diagnosis: https://alextlc.org/equity-for-rare/#poll
#AlexTLC #RareDiseaseDay #RareAware #Leukodystrophy
#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
Today is #RareDiseaseDay 🦓
This year's theme is Equity for Rare. Equity means promoting fairness through treating people differently based on individual needs. Often rare disease patients do not receive the medical care and support they so desperately need 💙
#AlexTLC #Leukodystrophy
Tomorrow is #RareDiseaseDay
This year's theme is Equity for Rare. Too often, rare disease patients do not receive the medical care and support they so desperately need and deserve in a timely manner.
https://alextlc.org/equity-for-rare/#karen
#AlexTLC #RareAware #Leukodystrophy
This month we are sharing about Pelizaeus-Merzbacher Disease (PMD) 💙
For condition information please visit: alextlc.org/condition/pelizaeus-merz...
We support all leukodystrophies - for support email info@alextlc.org
#AlexTLC #PelizaeusMerzbacherDisease #Leukodystrophy
Our #RareDiseaseDay stained glass window is taking shape!
Huge thanks to everyone who has donated so far this year. Every donation helps us continue to shine a light on #leukodystrophy and support those affected 🌟💙
https://visufund.com/alex-tlc-light-up-for-rare
February News Round-Up is out today 📩
This month we will be sharing about Rare Disease Day, our counselling service, lighting up our stained glass window and newborn screening updates 💙
Join our mailing list: https://alextlc.org/newsletter-sign-up/
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
Promising clinical trial update for individuals and families affected by Aicardi Goutieres Syndrome (AGS) 💙
Read ImmuneSensor Therapeutics press release: https://www.immunesensor.com/news/021226/
#AicardiGoutieresSyndrome #Leukodystrophy
February is #PayrollGivingMonth!
With Payroll Giving, a £10 donation will only cost you £8 if you're a standard rate taxpayer and only £6 if you're in the 40% band.
https://alextlc.org/news/payroll-giving-month/
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy
We currently have 42 wonderful people who donate monthly. Could you help us hit 100 regular donors? Even a small amount each month really makes a big difference to our work.
Sign up here: https://alextlc.org/help-us-hit-100/
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #HelpUsHit100
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
It's #TimeToTalkDay
Our Support Services offer various ways to talk about your experience with leukodystrophy, including one to one, online community meetings and counselling.
Find out more: https://alextlc.org/how-we-support-you/
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #TimeToTalk
"The Northwest Regional Newborn Bloodspot Screening Advisory Board approved the addition of Infantile Krabbe Disease (IKD) to the Oregon panel. The NWRNBS Program will implement screening for IKD on Saturday, November 1, 2025."
https://ow.ly/pAE950Y8eIb
#KrabbeDisease #Leukodystrophy
Want to spread awareness of #leukodystrophy or spark conversations? Our Teemill shop has a large selection of designs, with a small royalty from each purchase going towards our vital work. What's more, shipping is FREE this weekend, no code needed!
https://alex-tlc.teemill.com/
#AlexTLC #Teemill
