A family in Spain is trying to connect people living with PI4KA-related hypomyelinating leukodystrophy in Europe. If you or your loved one is affected, and you'd like us to pass on your details, please email: info@alextlc.org
Please share 💙
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #PI4KA
Please share 💙
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #PI4KA
August 12, 2026 at 6:00 AM
A family in Spain is trying to connect people living with PI4KA-related hypomyelinating leukodystrophy in Europe. If you or your loved one is affected, and you'd like us to pass on your details, please email: info@alextlc.org
Please share 💙
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #PI4KA
Please share 💙
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #PI4KA
💙 Let's turn September BLUE! 💙
Take part in #WearItBlue this Leukodystrophy Awareness Month. Wear blue, raise awareness and help support families affected by these rare conditions.
Sign up: https://alextlc.org/get-involved/wear-it-blue/#day
#AlexTLC #LeukodystrophyAwareness
Take part in #WearItBlue this Leukodystrophy Awareness Month. Wear blue, raise awareness and help support families affected by these rare conditions.
Sign up: https://alextlc.org/get-involved/wear-it-blue/#day
#AlexTLC #LeukodystrophyAwareness
August 11, 2026 at 12:01 PM
💙 Let's turn September BLUE! 💙
Take part in #WearItBlue this Leukodystrophy Awareness Month. Wear blue, raise awareness and help support families affected by these rare conditions.
Sign up: https://alextlc.org/get-involved/wear-it-blue/#day
#AlexTLC #LeukodystrophyAwareness
Take part in #WearItBlue this Leukodystrophy Awareness Month. Wear blue, raise awareness and help support families affected by these rare conditions.
Sign up: https://alextlc.org/get-involved/wear-it-blue/#day
#AlexTLC #LeukodystrophyAwareness
Could you help make our raffle extra special by donating a prize?
People travel from all over the country to attend, so items that are easy to transport, such as digital vouchers, gift cards, or small gifts, are especially appreciated.
To donate a prize, please email info@alextlc.org.
#AlexTLC
People travel from all over the country to attend, so items that are easy to transport, such as digital vouchers, gift cards, or small gifts, are especially appreciated.
To donate a prize, please email info@alextlc.org.
#AlexTLC
August 10, 2026 at 6:00 PM
Could you help make our raffle extra special by donating a prize?
People travel from all over the country to attend, so items that are easy to transport, such as digital vouchers, gift cards, or small gifts, are especially appreciated.
To donate a prize, please email info@alextlc.org.
#AlexTLC
People travel from all over the country to attend, so items that are easy to transport, such as digital vouchers, gift cards, or small gifts, are especially appreciated.
To donate a prize, please email info@alextlc.org.
#AlexTLC
Given the impending 5th heatwave of 2026 🥵 we thought we'd share some of our community's tips for keeping cool in the hot weather. Huge thanks to everyone who responded to our ask last month.
alextlc.org/our-community/ask-our-community/
#AlexTLC #HelpToCope #HelpToHope #HeatWave #KeepCool
alextlc.org/our-community/ask-our-community/
#AlexTLC #HelpToCope #HelpToHope #HeatWave #KeepCool
August 10, 2026 at 11:30 AM
Given the impending 5th heatwave of 2026 🥵 we thought we'd share some of our community's tips for keeping cool in the hot weather. Huge thanks to everyone who responded to our ask last month.
alextlc.org/our-community/ask-our-community/
#AlexTLC #HelpToCope #HelpToHope #HeatWave #KeepCool
alextlc.org/our-community/ask-our-community/
#AlexTLC #HelpToCope #HelpToHope #HeatWave #KeepCool
Your donation to Alex TLC’s Community Weekend Appeal helps bring together people who often feel lonely and isolated in daily life due to their or their loved one's condition.
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #LeukodystrophySupport #CommunityWeekend #RareDiseaseCommunity
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #LeukodystrophySupport #CommunityWeekend #RareDiseaseCommunity
August 8, 2026 at 6:01 PM
Your donation to Alex TLC’s Community Weekend Appeal helps bring together people who often feel lonely and isolated in daily life due to their or their loved one's condition.
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #LeukodystrophySupport #CommunityWeekend #RareDiseaseCommunity
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #LeukodystrophySupport #CommunityWeekend #RareDiseaseCommunity
Our lucky 50/50 Cash Draw winner for August has won £202 with number 161!
Will you be a winner in our September draw? It's just £1 per month if you purchase an annual entry for £12, or subscribe from just £2 a month for 2 entries.
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #CashDraw
Will you be a winner in our September draw? It's just £1 per month if you purchase an annual entry for £12, or subscribe from just £2 a month for 2 entries.
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #CashDraw
August 7, 2026 at 12:01 PM
Our lucky 50/50 Cash Draw winner for August has won £202 with number 161!
Will you be a winner in our September draw? It's just £1 per month if you purchase an annual entry for £12, or subscribe from just £2 a month for 2 entries.
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #CashDraw
Will you be a winner in our September draw? It's just £1 per month if you purchase an annual entry for £12, or subscribe from just £2 a month for 2 entries.
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #CashDraw
If we've supported you or your family in any way, we'd be so grateful if you could tell us.
Your words help us:
💙 Reach more people who need us
💙 Secure future funding
💙 Raise awareness of leukodystrophy
alextlc.org/alex-tlc-and-me/
#AlexTLC #AlexTLCAndMe #Leukodystrophy #RareDiseaseSupport
Your words help us:
💙 Reach more people who need us
💙 Secure future funding
💙 Raise awareness of leukodystrophy
alextlc.org/alex-tlc-and-me/
#AlexTLC #AlexTLCAndMe #Leukodystrophy #RareDiseaseSupport
August 6, 2026 at 6:01 PM
If we've supported you or your family in any way, we'd be so grateful if you could tell us.
Your words help us:
💙 Reach more people who need us
💙 Secure future funding
💙 Raise awareness of leukodystrophy
alextlc.org/alex-tlc-and-me/
#AlexTLC #AlexTLCAndMe #Leukodystrophy #RareDiseaseSupport
Your words help us:
💙 Reach more people who need us
💙 Secure future funding
💙 Raise awareness of leukodystrophy
alextlc.org/alex-tlc-and-me/
#AlexTLC #AlexTLCAndMe #Leukodystrophy #RareDiseaseSupport
Please join us in saying a big thank you to Kellie and Ellie, for taking part in the 100K 2026 Race to the Stones, and raising an incredible £1055 for Alex TLC, in support of Lily 💙
Thank you both so much 🏃♀️🏃♀️
#AlexTLC #HelpToCope #HelpToHope #RaceToTheStones
Thank you both so much 🏃♀️🏃♀️
#AlexTLC #HelpToCope #HelpToHope #RaceToTheStones
August 5, 2026 at 6:01 PM
Please join us in saying a big thank you to Kellie and Ellie, for taking part in the 100K 2026 Race to the Stones, and raising an incredible £1055 for Alex TLC, in support of Lily 💙
Thank you both so much 🏃♀️🏃♀️
#AlexTLC #HelpToCope #HelpToHope #RaceToTheStones
Thank you both so much 🏃♀️🏃♀️
#AlexTLC #HelpToCope #HelpToHope #RaceToTheStones
Are you a partner of an adult with leukodystrophy?
Join our online meeting tomorrow, 5th Aug, 6–7:30pm BST.
Email info@alextlc.org for the link.
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #CareAboutRare #SupportGroup
Join our online meeting tomorrow, 5th Aug, 6–7:30pm BST.
Email info@alextlc.org for the link.
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #CareAboutRare #SupportGroup
August 4, 2026 at 6:00 PM
Are you a partner of an adult with leukodystrophy?
Join our online meeting tomorrow, 5th Aug, 6–7:30pm BST.
Email info@alextlc.org for the link.
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #CareAboutRare #SupportGroup
Join our online meeting tomorrow, 5th Aug, 6–7:30pm BST.
Email info@alextlc.org for the link.
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #CareAboutRare #SupportGroup
Tired of having to explain your condition over and over? The Rare Patient Passport was created to help people living with rare diseases communicate essential information and support more coordinated care. #AlexTLC helped shape its development.
🎥 Watch here: www.youtube.com/watch?v=QxhSL_IhaHk
🎥 Watch here: www.youtube.com/watch?v=QxhSL_IhaHk
August 4, 2026 at 12:01 PM
Tired of having to explain your condition over and over? The Rare Patient Passport was created to help people living with rare diseases communicate essential information and support more coordinated care. #AlexTLC helped shape its development.
🎥 Watch here: www.youtube.com/watch?v=QxhSL_IhaHk
🎥 Watch here: www.youtube.com/watch?v=QxhSL_IhaHk
People affected by leukodystrophy rely on our Community Weekends to connect with others who understand, learn from experts about symptom management and research, and create memories that last long after the weekend ends 💙
Please donate if you can: www.justgiving.com/campaign/alextlc-cw
#AlexTLC
Please donate if you can: www.justgiving.com/campaign/alextlc-cw
#AlexTLC
August 1, 2026 at 6:01 PM
People affected by leukodystrophy rely on our Community Weekends to connect with others who understand, learn from experts about symptom management and research, and create memories that last long after the weekend ends 💙
Please donate if you can: www.justgiving.com/campaign/alextlc-cw
#AlexTLC
Please donate if you can: www.justgiving.com/campaign/alextlc-cw
#AlexTLC
Would you consider donating a prize to help make our Community Weekend Raffle a real success?
We’ve created an Amazon Wishlist with plenty of easy options to choose from:
https://www.amazon.co.uk/hz/wishlist/ls/18984NK0B4WXD
#AlexTLC #HelpToCope #HelpToHope #Raffle #WishList
We’ve created an Amazon Wishlist with plenty of easy options to choose from:
https://www.amazon.co.uk/hz/wishlist/ls/18984NK0B4WXD
#AlexTLC #HelpToCope #HelpToHope #Raffle #WishList
July 30, 2026 at 6:00 PM
Would you consider donating a prize to help make our Community Weekend Raffle a real success?
We’ve created an Amazon Wishlist with plenty of easy options to choose from:
https://www.amazon.co.uk/hz/wishlist/ls/18984NK0B4WXD
#AlexTLC #HelpToCope #HelpToHope #Raffle #WishList
We’ve created an Amazon Wishlist with plenty of easy options to choose from:
https://www.amazon.co.uk/hz/wishlist/ls/18984NK0B4WXD
#AlexTLC #HelpToCope #HelpToHope #Raffle #WishList
#AlexTLC recently submitted evidence for the Scottish Medicine Consortium review of the medicine Libmeldy for approval of it through NHS Scotland for patients with metachromatic leukodystrophy (MLD).
https://alextlc.org/news/advocating-for-access-to-libmeldy/
#Leukodystrophy #MLD #Libmeldy
https://alextlc.org/news/advocating-for-access-to-libmeldy/
#Leukodystrophy #MLD #Libmeldy
July 30, 2026 at 6:00 AM
#AlexTLC recently submitted evidence for the Scottish Medicine Consortium review of the medicine Libmeldy for approval of it through NHS Scotland for patients with metachromatic leukodystrophy (MLD).
https://alextlc.org/news/advocating-for-access-to-libmeldy/
#Leukodystrophy #MLD #Libmeldy
https://alextlc.org/news/advocating-for-access-to-libmeldy/
#Leukodystrophy #MLD #Libmeldy
Are you the partner of an adult affected by leukodystrophy? 💙
Join our online support meeting on Wednesday 5th August, 6:00pm - 7:30pm BST (UK time) and connect with others who understand.
📧 Email info@alextlc.org for the joining link.
#AlexTLC #Leukodystrophy #CareAboutRare #SupportGroup
Join our online support meeting on Wednesday 5th August, 6:00pm - 7:30pm BST (UK time) and connect with others who understand.
📧 Email info@alextlc.org for the joining link.
#AlexTLC #Leukodystrophy #CareAboutRare #SupportGroup
July 29, 2026 at 6:01 PM
Are you the partner of an adult affected by leukodystrophy? 💙
Join our online support meeting on Wednesday 5th August, 6:00pm - 7:30pm BST (UK time) and connect with others who understand.
📧 Email info@alextlc.org for the joining link.
#AlexTLC #Leukodystrophy #CareAboutRare #SupportGroup
Join our online support meeting on Wednesday 5th August, 6:00pm - 7:30pm BST (UK time) and connect with others who understand.
📧 Email info@alextlc.org for the joining link.
#AlexTLC #Leukodystrophy #CareAboutRare #SupportGroup
We have been fighting to add #adrenoleukodystrophy (ALD) to the UK #NewbornScreening Blood Spot Programme since 2017 and submitted extensive additional evidence to the National Screening Committee (NSC) this month.
alextlc.org/news/additional-evidence-submitted-to-nsc/
#AlexTLC #ALD
alextlc.org/news/additional-evidence-submitted-to-nsc/
#AlexTLC #ALD
July 28, 2026 at 6:00 PM
We have been fighting to add #adrenoleukodystrophy (ALD) to the UK #NewbornScreening Blood Spot Programme since 2017 and submitted extensive additional evidence to the National Screening Committee (NSC) this month.
alextlc.org/news/additional-evidence-submitted-to-nsc/
#AlexTLC #ALD
alextlc.org/news/additional-evidence-submitted-to-nsc/
#AlexTLC #ALD
Applications are now open for disability entries and assisted wheelchair entries to the Double TCS London Marathon 2027.
More info: https://www.londonmarathonevents.co.uk/london-marathon/participants-disabilities
#AlexTLC #HelpToCope #HelpToHope #LondonMarathon
More info: https://www.londonmarathonevents.co.uk/london-marathon/participants-disabilities
#AlexTLC #HelpToCope #HelpToHope #LondonMarathon
July 28, 2026 at 11:00 AM
Applications are now open for disability entries and assisted wheelchair entries to the Double TCS London Marathon 2027.
More info: https://www.londonmarathonevents.co.uk/london-marathon/participants-disabilities
#AlexTLC #HelpToCope #HelpToHope #LondonMarathon
More info: https://www.londonmarathonevents.co.uk/london-marathon/participants-disabilities
#AlexTLC #HelpToCope #HelpToHope #LondonMarathon
Our July Research Summary is now available 🔬📃
https://alextlc.org/research/research-summary-july-2026/
You can also view previous research summaries here: https://alextlc.org/research-and-projects/our-research-summaries
email us with your questions: info@alextlc.org
#AlexTLC #Leukodystrophy
https://alextlc.org/research/research-summary-july-2026/
You can also view previous research summaries here: https://alextlc.org/research-and-projects/our-research-summaries
email us with your questions: info@alextlc.org
#AlexTLC #Leukodystrophy
July 27, 2026 at 10:00 AM
Our July Research Summary is now available 🔬📃
https://alextlc.org/research/research-summary-july-2026/
You can also view previous research summaries here: https://alextlc.org/research-and-projects/our-research-summaries
email us with your questions: info@alextlc.org
#AlexTLC #Leukodystrophy
https://alextlc.org/research/research-summary-july-2026/
You can also view previous research summaries here: https://alextlc.org/research-and-projects/our-research-summaries
email us with your questions: info@alextlc.org
#AlexTLC #Leukodystrophy
When it’s time to renew your home or car insurance, compare and switch through #easyfundraising.
It won’t cost you a penny, but it could raise an average a £15 donation for #AlexTLC! It’s a donation we don’t want to miss. Not supporting us? Sign up:
www.easyfundraising.org.uk/causes/alextlc/
It won’t cost you a penny, but it could raise an average a £15 donation for #AlexTLC! It’s a donation we don’t want to miss. Not supporting us? Sign up:
www.easyfundraising.org.uk/causes/alextlc/
July 26, 2026 at 8:00 AM
When it’s time to renew your home or car insurance, compare and switch through #easyfundraising.
It won’t cost you a penny, but it could raise an average a £15 donation for #AlexTLC! It’s a donation we don’t want to miss. Not supporting us? Sign up:
www.easyfundraising.org.uk/causes/alextlc/
It won’t cost you a penny, but it could raise an average a £15 donation for #AlexTLC! It’s a donation we don’t want to miss. Not supporting us? Sign up:
www.easyfundraising.org.uk/causes/alextlc/
Ask our community for July 💙
This month we'd like to know if you have any tips for keeping yourself or your loved ones cool in the hot weather we've been having? ☀️
Please comment below or send your suggestions to info@alextlc.org 📨
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
This month we'd like to know if you have any tips for keeping yourself or your loved ones cool in the hot weather we've been having? ☀️
Please comment below or send your suggestions to info@alextlc.org 📨
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
July 25, 2026 at 6:00 PM
Ask our community for July 💙
This month we'd like to know if you have any tips for keeping yourself or your loved ones cool in the hot weather we've been having? ☀️
Please comment below or send your suggestions to info@alextlc.org 📨
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
This month we'd like to know if you have any tips for keeping yourself or your loved ones cool in the hot weather we've been having? ☀️
Please comment below or send your suggestions to info@alextlc.org 📨
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
How has Alex TLC supported you on your leukodystrophy journey?
By sharing your story, you can help us show the real impact of Alex TLC’s work for individuals, families and carers affected by leukodystrophy.
https://alextlc.org/alex-tlc-and-me/
#AlexTLC #AlexTLCAndMe #Leukodystrophy
By sharing your story, you can help us show the real impact of Alex TLC’s work for individuals, families and carers affected by leukodystrophy.
https://alextlc.org/alex-tlc-and-me/
#AlexTLC #AlexTLCAndMe #Leukodystrophy
July 24, 2026 at 6:02 PM
How has Alex TLC supported you on your leukodystrophy journey?
By sharing your story, you can help us show the real impact of Alex TLC’s work for individuals, families and carers affected by leukodystrophy.
https://alextlc.org/alex-tlc-and-me/
#AlexTLC #AlexTLCAndMe #Leukodystrophy
By sharing your story, you can help us show the real impact of Alex TLC’s work for individuals, families and carers affected by leukodystrophy.
https://alextlc.org/alex-tlc-and-me/
#AlexTLC #AlexTLCAndMe #Leukodystrophy
When you donate to our Community Weekend Appeal, you are ensuring families can come together in a safe space with others who truly understand.
With your support, we can continue providing these vital events in the future 💙
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #CommunityWeekend
With your support, we can continue providing these vital events in the future 💙
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #CommunityWeekend
July 23, 2026 at 7:00 PM
When you donate to our Community Weekend Appeal, you are ensuring families can come together in a safe space with others who truly understand.
With your support, we can continue providing these vital events in the future 💙
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #CommunityWeekend
With your support, we can continue providing these vital events in the future 💙
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #CommunityWeekend
July's 50/50 Cash Draw prize pot was a whopping £203! Want to be in with the chance of winning in the August draw? It's just £1 per month if you purchase an annual entry for £12, or subscribe from just £2 a month for 2 entries.
alextlc.org/donate/5050-cash-draw/
#AlexTLC #CashPrize #Win
alextlc.org/donate/5050-cash-draw/
#AlexTLC #CashPrize #Win
July 22, 2026 at 6:00 PM
July's 50/50 Cash Draw prize pot was a whopping £203! Want to be in with the chance of winning in the August draw? It's just £1 per month if you purchase an annual entry for £12, or subscribe from just £2 a month for 2 entries.
alextlc.org/donate/5050-cash-draw/
#AlexTLC #CashPrize #Win
alextlc.org/donate/5050-cash-draw/
#AlexTLC #CashPrize #Win
💙 Let's turn September BLUE 💙
September is Leukodystrophy Awareness Month, and we'd love you to hold a Wear it Blue Day for your school, workplace or community group.
Find out more and sign up today: https://alextlc.org/fundraise/fundraising-ideas/wear-it-blue
#AlexTLC #LeukodystrophyAwareness
September is Leukodystrophy Awareness Month, and we'd love you to hold a Wear it Blue Day for your school, workplace or community group.
Find out more and sign up today: https://alextlc.org/fundraise/fundraising-ideas/wear-it-blue
#AlexTLC #LeukodystrophyAwareness
July 21, 2026 at 12:01 PM
💙 Let's turn September BLUE 💙
September is Leukodystrophy Awareness Month, and we'd love you to hold a Wear it Blue Day for your school, workplace or community group.
Find out more and sign up today: https://alextlc.org/fundraise/fundraising-ideas/wear-it-blue
#AlexTLC #LeukodystrophyAwareness
September is Leukodystrophy Awareness Month, and we'd love you to hold a Wear it Blue Day for your school, workplace or community group.
Find out more and sign up today: https://alextlc.org/fundraise/fundraising-ideas/wear-it-blue
#AlexTLC #LeukodystrophyAwareness
Want to take on a challenge as unique as you are?
Join our Walk 'N' Roll challenge and you can pick the distance and route, complete your challenge on a particular day, or throughout a month.
https://alextlc.org/fundraise/fundraising-ideas/walk-n-roll/
#AlexTLC #HelpToCope #HelpToCope #WalkNRoll
Join our Walk 'N' Roll challenge and you can pick the distance and route, complete your challenge on a particular day, or throughout a month.
https://alextlc.org/fundraise/fundraising-ideas/walk-n-roll/
#AlexTLC #HelpToCope #HelpToCope #WalkNRoll
July 19, 2026 at 8:00 AM
Want to take on a challenge as unique as you are?
Join our Walk 'N' Roll challenge and you can pick the distance and route, complete your challenge on a particular day, or throughout a month.
https://alextlc.org/fundraise/fundraising-ideas/walk-n-roll/
#AlexTLC #HelpToCope #HelpToCope #WalkNRoll
Join our Walk 'N' Roll challenge and you can pick the distance and route, complete your challenge on a particular day, or throughout a month.
https://alextlc.org/fundraise/fundraising-ideas/walk-n-roll/
#AlexTLC #HelpToCope #HelpToCope #WalkNRoll
Help shape the future of APBD research! 💙
The APBD Research Foundation is inviting APBD patients and carers (18+) to complete a survey on clinical trial readiness.
Find out more: https://alextlc.org/news/apbd-clinical-trial-questionnaire/
#AlexTLC #APBD #Leukodystrophy #ClinicalTrials
The APBD Research Foundation is inviting APBD patients and carers (18+) to complete a survey on clinical trial readiness.
Find out more: https://alextlc.org/news/apbd-clinical-trial-questionnaire/
#AlexTLC #APBD #Leukodystrophy #ClinicalTrials
APBD Clinical Trial Questionnaire
alextlc.org
July 18, 2026 at 12:00 PM
Help shape the future of APBD research! 💙
The APBD Research Foundation is inviting APBD patients and carers (18+) to complete a survey on clinical trial readiness.
Find out more: https://alextlc.org/news/apbd-clinical-trial-questionnaire/
#AlexTLC #APBD #Leukodystrophy #ClinicalTrials
The APBD Research Foundation is inviting APBD patients and carers (18+) to complete a survey on clinical trial readiness.
Find out more: https://alextlc.org/news/apbd-clinical-trial-questionnaire/
#AlexTLC #APBD #Leukodystrophy #ClinicalTrials