Alex TLC
@alex-tlc.bsky.social
Alex, The Leukodystrophy Charity, or Alex TLC, provides invaluable support and information to people affected by leukodystrophies and their families.
Linktree: https://linktr.ee/Alextlccharity
Linktree: https://linktr.ee/Alextlccharity
Our lucky 50/50 Cash Draw winner for January has won £183.50, with number 105!
Sign up now to be in with a chance of winning in the February draw 💰
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #CashPrize #Win
Sign up now to be in with a chance of winning in the February draw 💰
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #CashPrize #Win
January 6, 2026 at 7:00 PM
Our lucky 50/50 Cash Draw winner for January has won £183.50, with number 105!
Sign up now to be in with a chance of winning in the February draw 💰
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #CashPrize #Win
Sign up now to be in with a chance of winning in the February draw 💰
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #CashPrize #Win
Ionis has opened an Expanded Access Program (EAP) for people with Alexander disease to access zilganersen in the United States
Ionis have released a Community Statement with further information: https://alextlc.org/news/ionis-zilganersen-programme-update/
#AxD #AlexanderDisease #Leukodystrophy
Ionis have released a Community Statement with further information: https://alextlc.org/news/ionis-zilganersen-programme-update/
#AxD #AlexanderDisease #Leukodystrophy
January 6, 2026 at 4:02 PM
Ionis has opened an Expanded Access Program (EAP) for people with Alexander disease to access zilganersen in the United States
Ionis have released a Community Statement with further information: https://alextlc.org/news/ionis-zilganersen-programme-update/
#AxD #AlexanderDisease #Leukodystrophy
Ionis have released a Community Statement with further information: https://alextlc.org/news/ionis-zilganersen-programme-update/
#AxD #AlexanderDisease #Leukodystrophy
Heartfelt thanks to everyone who donated to our Light Up the Sky campaign for our Support Services. You raised an incredible £715!
This money will go directly towards vital services such as one to one sessions, online community meetings, counselling and our grant programme.
Thank you💙
This money will go directly towards vital services such as one to one sessions, online community meetings, counselling and our grant programme.
Thank you💙
January 5, 2026 at 6:01 PM
Heartfelt thanks to everyone who donated to our Light Up the Sky campaign for our Support Services. You raised an incredible £715!
This money will go directly towards vital services such as one to one sessions, online community meetings, counselling and our grant programme.
Thank you💙
This money will go directly towards vital services such as one to one sessions, online community meetings, counselling and our grant programme.
Thank you💙
Would you like to raise money to support Alex TLC, but don’t know where to start?
Check out our A-Z of Fundraising for inspiration! From abseils to zumbathons, you're bound to find something that excites you.
https://alextlc.org/fundraise/fundraising-ideas/fundraising-a-z/
#AlexTLC #Fundraising
Check out our A-Z of Fundraising for inspiration! From abseils to zumbathons, you're bound to find something that excites you.
https://alextlc.org/fundraise/fundraising-ideas/fundraising-a-z/
#AlexTLC #Fundraising
January 4, 2026 at 9:00 AM
Would you like to raise money to support Alex TLC, but don’t know where to start?
Check out our A-Z of Fundraising for inspiration! From abseils to zumbathons, you're bound to find something that excites you.
https://alextlc.org/fundraise/fundraising-ideas/fundraising-a-z/
#AlexTLC #Fundraising
Check out our A-Z of Fundraising for inspiration! From abseils to zumbathons, you're bound to find something that excites you.
https://alextlc.org/fundraise/fundraising-ideas/fundraising-a-z/
#AlexTLC #Fundraising
There's only one place left for the Falkirk Wheel Abseil on 22nd March 2026!
Find out more: https://alextlc.org/fundraising-event/falkirk-wheel-abseil/
#alextlc #helptocope #helptohope #abseil #falkirk #falkirkwheel #hallglen #laurieston #grangemouth #redding #carronshore #larbert
Find out more: https://alextlc.org/fundraising-event/falkirk-wheel-abseil/
#alextlc #helptocope #helptohope #abseil #falkirk #falkirkwheel #hallglen #laurieston #grangemouth #redding #carronshore #larbert
January 3, 2026 at 4:00 PM
There's only one place left for the Falkirk Wheel Abseil on 22nd March 2026!
Find out more: https://alextlc.org/fundraising-event/falkirk-wheel-abseil/
#alextlc #helptocope #helptohope #abseil #falkirk #falkirkwheel #hallglen #laurieston #grangemouth #redding #carronshore #larbert
Find out more: https://alextlc.org/fundraising-event/falkirk-wheel-abseil/
#alextlc #helptocope #helptohope #abseil #falkirk #falkirkwheel #hallglen #laurieston #grangemouth #redding #carronshore #larbert
Huge thanks to everyone who created a fundraiser or donated via Facebook last year. You raised an incredible £2937!
Unfortunately Facebook doesn't always give us your details, but we'd love to know more about why you supported us, so please send us a message or email [email protected]
#AlexTLC
Unfortunately Facebook doesn't always give us your details, but we'd love to know more about why you supported us, so please send us a message or email [email protected]
#AlexTLC
January 2, 2026 at 6:01 PM
Huge thanks to everyone who created a fundraiser or donated via Facebook last year. You raised an incredible £2937!
Unfortunately Facebook doesn't always give us your details, but we'd love to know more about why you supported us, so please send us a message or email [email protected]
#AlexTLC
Unfortunately Facebook doesn't always give us your details, but we'd love to know more about why you supported us, so please send us a message or email [email protected]
#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
https://alex-tlc.teemill.com/
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #LeukodystrophyAwareness #Teemill #CyberWeek
January 2, 2026 at 8:01 AM
Teemill are offering free UK Shipping this weekend! No code is needed.
https://alex-tlc.teemill.com/
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #LeukodystrophyAwareness #Teemill #CyberWeek
https://alex-tlc.teemill.com/
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #LeukodystrophyAwareness #Teemill #CyberWeek
Happy New Year to everyone within our community!
Thank you for being part of our Alex TLC family and for your unwavering support 💙
We look forward to facing 2026 together, and the hope and possibilities it may bring 💫
#AlextlcTLC #HelpToCope #HelpToHope #Leukodystrophy
Thank you for being part of our Alex TLC family and for your unwavering support 💙
We look forward to facing 2026 together, and the hope and possibilities it may bring 💫
#AlextlcTLC #HelpToCope #HelpToHope #Leukodystrophy
January 1, 2026 at 9:01 AM
Happy New Year to everyone within our community!
Thank you for being part of our Alex TLC family and for your unwavering support 💙
We look forward to facing 2026 together, and the hope and possibilities it may bring 💫
#AlextlcTLC #HelpToCope #HelpToHope #Leukodystrophy
Thank you for being part of our Alex TLC family and for your unwavering support 💙
We look forward to facing 2026 together, and the hope and possibilities it may bring 💫
#AlextlcTLC #HelpToCope #HelpToHope #Leukodystrophy
We'd like to say a huge thank you to everyone who has donated to our Light Up the Sky appeal so far.
Our support services are crucial for those affected by leukodystrophy and demand is growing.
Thank you for helping us light up the sky with hope 🌟
https://visufund.com/light-up-the-sky
Our support services are crucial for those affected by leukodystrophy and demand is growing.
Thank you for helping us light up the sky with hope 🌟
https://visufund.com/light-up-the-sky
December 31, 2025 at 6:01 PM
We'd like to say a huge thank you to everyone who has donated to our Light Up the Sky appeal so far.
Our support services are crucial for those affected by leukodystrophy and demand is growing.
Thank you for helping us light up the sky with hope 🌟
https://visufund.com/light-up-the-sky
Our support services are crucial for those affected by leukodystrophy and demand is growing.
Thank you for helping us light up the sky with hope 🌟
https://visufund.com/light-up-the-sky
This month we are sharing about POLR3 related leukodystrophy 💙
For condition information visit: https://alextlc.org/condition/polr3-related-leukodystrophy/ or Yaya Foundation: https://yayafoundation4hl.org/
For support email [email protected]
#AlexTLC #4HLeukodystrophy #POLR3RelatedLeukodystrophy
For condition information visit: https://alextlc.org/condition/polr3-related-leukodystrophy/ or Yaya Foundation: https://yayafoundation4hl.org/
For support email [email protected]
#AlexTLC #4HLeukodystrophy #POLR3RelatedLeukodystrophy
December 31, 2025 at 10:00 AM
This month we are sharing about POLR3 related leukodystrophy 💙
For condition information visit: https://alextlc.org/condition/polr3-related-leukodystrophy/ or Yaya Foundation: https://yayafoundation4hl.org/
For support email [email protected]
#AlexTLC #4HLeukodystrophy #POLR3RelatedLeukodystrophy
For condition information visit: https://alextlc.org/condition/polr3-related-leukodystrophy/ or Yaya Foundation: https://yayafoundation4hl.org/
For support email [email protected]
#AlexTLC #4HLeukodystrophy #POLR3RelatedLeukodystrophy
Today we're saying a big thank you to Bethan, who raised £160 for Alex TLC making and selling Gonks in support of her brother, Sam, who lives with adrenoleukodystrophy (ALD).
Thank you, Bethan!
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #Fundraising #ThankYou #CareAboutRare
Thank you, Bethan!
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #Fundraising #ThankYou #CareAboutRare
December 31, 2025 at 9:30 AM
Today we're saying a big thank you to Bethan, who raised £160 for Alex TLC making and selling Gonks in support of her brother, Sam, who lives with adrenoleukodystrophy (ALD).
Thank you, Bethan!
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #Fundraising #ThankYou #CareAboutRare
Thank you, Bethan!
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #Fundraising #ThankYou #CareAboutRare
Unfortunately, lots of our 50/50 gift vouchers purchased last year haven't been renewed, which means we need 28 new sign ups to keep the prize at the same level.
The prize pot for January will still be over £170, so it's well worth signing up 💰
https://alextlc.org/donate/5050-cash-draw/
The prize pot for January will still be over £170, so it's well worth signing up 💰
https://alextlc.org/donate/5050-cash-draw/
December 30, 2025 at 6:01 PM
Unfortunately, lots of our 50/50 gift vouchers purchased last year haven't been renewed, which means we need 28 new sign ups to keep the prize at the same level.
The prize pot for January will still be over £170, so it's well worth signing up 💰
https://alextlc.org/donate/5050-cash-draw/
The prize pot for January will still be over £170, so it's well worth signing up 💰
https://alextlc.org/donate/5050-cash-draw/
Help us continue to provide critical support services for families like Ruth's. Donate today and join us in helping to cope and helping to hope.
https://visufund.com/light-up-the-sky
#AlexTLC #HelpToCope #HelpToHope #LightUpTheSky #Support
https://visufund.com/light-up-the-sky
#AlexTLC #HelpToCope #HelpToHope #LightUpTheSky #Support
December 29, 2025 at 4:02 PM
Help us continue to provide critical support services for families like Ruth's. Donate today and join us in helping to cope and helping to hope.
https://visufund.com/light-up-the-sky
#AlexTLC #HelpToCope #HelpToHope #LightUpTheSky #Support
https://visufund.com/light-up-the-sky
#AlexTLC #HelpToCope #HelpToHope #LightUpTheSky #Support
Looking for a new challenge to start 2026?
Planning to lead a healthier lifestyle or just want to do something for charity? If so, Alex TLC’s #GiveUpToGiveBack campaign could be just the thing for you.
https://alextlc.org/fundraise/fundraising-ideas/give-up-to-give-back/
#AlexTLC
Planning to lead a healthier lifestyle or just want to do something for charity? If so, Alex TLC’s #GiveUpToGiveBack campaign could be just the thing for you.
https://alextlc.org/fundraise/fundraising-ideas/give-up-to-give-back/
#AlexTLC
December 27, 2025 at 10:00 AM
Looking for a new challenge to start 2026?
Planning to lead a healthier lifestyle or just want to do something for charity? If so, Alex TLC’s #GiveUpToGiveBack campaign could be just the thing for you.
https://alextlc.org/fundraise/fundraising-ideas/give-up-to-give-back/
#AlexTLC
Planning to lead a healthier lifestyle or just want to do something for charity? If so, Alex TLC’s #GiveUpToGiveBack campaign could be just the thing for you.
https://alextlc.org/fundraise/fundraising-ideas/give-up-to-give-back/
#AlexTLC
More people than ever need our support. We rely on your donations to be able to provide one-to-one sessions, community meetings, and counselling that helps families cope with leukodystrophy.
https://visufund.com/light-up-the-sky
#AlexTLC #HelpToCope #HelpToHope #LightUpTheSky
https://visufund.com/light-up-the-sky
#AlexTLC #HelpToCope #HelpToHope #LightUpTheSky
December 26, 2025 at 6:01 PM
More people than ever need our support. We rely on your donations to be able to provide one-to-one sessions, community meetings, and counselling that helps families cope with leukodystrophy.
https://visufund.com/light-up-the-sky
#AlexTLC #HelpToCope #HelpToHope #LightUpTheSky
https://visufund.com/light-up-the-sky
#AlexTLC #HelpToCope #HelpToHope #LightUpTheSky
We would like to wish everyone a very Merry Christmas! 🎅🎄
We hope your festive period is the best it can possibly be and send love to those who are finding this time difficult 💙
#AlexTLC #HelptToCope #HelpToHope #Leukodystrophy
We hope your festive period is the best it can possibly be and send love to those who are finding this time difficult 💙
#AlexTLC #HelptToCope #HelpToHope #Leukodystrophy
December 25, 2025 at 7:00 AM
We would like to wish everyone a very Merry Christmas! 🎅🎄
We hope your festive period is the best it can possibly be and send love to those who are finding this time difficult 💙
#AlexTLC #HelptToCope #HelpToHope #Leukodystrophy
We hope your festive period is the best it can possibly be and send love to those who are finding this time difficult 💙
#AlexTLC #HelptToCope #HelpToHope #Leukodystrophy
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
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
December 24, 2025 at 10:59 AM
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
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
Meet the NHS England Inherited White Matter Disorders (IWMD) team 👩⚕️
Dr Lydia Green is a Paediatric Neurologist at Leeds Children's Hospital. To meet Dr Green and the rest of the team: https://alextlc.org/nhs-england-iwmd-leukodystrophy-professionals/
#IWMDService #Leukodystrophy #NHSEngland #AlexTLC
Dr Lydia Green is a Paediatric Neurologist at Leeds Children's Hospital. To meet Dr Green and the rest of the team: https://alextlc.org/nhs-england-iwmd-leukodystrophy-professionals/
#IWMDService #Leukodystrophy #NHSEngland #AlexTLC
December 23, 2025 at 10:00 AM
Meet the NHS England Inherited White Matter Disorders (IWMD) team 👩⚕️
Dr Lydia Green is a Paediatric Neurologist at Leeds Children's Hospital. To meet Dr Green and the rest of the team: https://alextlc.org/nhs-england-iwmd-leukodystrophy-professionals/
#IWMDService #Leukodystrophy #NHSEngland #AlexTLC
Dr Lydia Green is a Paediatric Neurologist at Leeds Children's Hospital. To meet Dr Green and the rest of the team: https://alextlc.org/nhs-england-iwmd-leukodystrophy-professionals/
#IWMDService #Leukodystrophy #NHSEngland #AlexTLC
Our December News Round-Up is out today 📩
We will share about our festive appeal, our Community Weekend 2026, our Support Services Impact Report 2025 and Give Up to Give Back in 2026 💙
Join our mailing list: https://alextlc.org/newsletter-sign-up/
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
We will share about our festive appeal, our Community Weekend 2026, our Support Services Impact Report 2025 and Give Up to Give Back in 2026 💙
Join our mailing list: https://alextlc.org/newsletter-sign-up/
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
December 22, 2025 at 2:01 PM
Our December News Round-Up is out today 📩
We will share about our festive appeal, our Community Weekend 2026, our Support Services Impact Report 2025 and Give Up to Give Back in 2026 💙
Join our mailing list: https://alextlc.org/newsletter-sign-up/
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
We will share about our festive appeal, our Community Weekend 2026, our Support Services Impact Report 2025 and Give Up to Give Back in 2026 💙
Join our mailing list: https://alextlc.org/newsletter-sign-up/
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
Looking for a last minute Christmas gift? We're taking orders for our 50/50 eGift vouchers until tomorrow, 23rd December 🎁💙
#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
#AlexTLC #HelpToCope #HelpToHope #CashDraw #StockingFiller #ChristmasGift
#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
#AlexTLC #HelpToCope #HelpToHope #CashDraw #StockingFiller #ChristmasGift
December 22, 2025 at 7:00 AM
Looking for a last minute Christmas gift? We're taking orders for our 50/50 eGift vouchers until tomorrow, 23rd December 🎁💙
#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
#AlexTLC #HelpToCope #HelpToHope #CashDraw #StockingFiller #ChristmasGift
#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
#AlexTLC #HelpToCope #HelpToHope #CashDraw #StockingFiller #ChristmasGift
December 21, 2025 at 5:00 PM
Missed the last post? With #dontsendmeacard you can send festive eCards by email, WhatsApp and Messenger. Just one donation from £2 gives you up to 100 eCards, and you can even personalise each one. 🎄
https://www.dontsendmeacard.com/ecards/charities/alex-the-leukodystrophy-charity/christmas
https://www.dontsendmeacard.com/ecards/charities/alex-the-leukodystrophy-charity/christmas
December 21, 2025 at 9:00 AM
Missed the last post? With #dontsendmeacard you can send festive eCards by email, WhatsApp and Messenger. Just one donation from £2 gives you up to 100 eCards, and you can even personalise each one. 🎄
https://www.dontsendmeacard.com/ecards/charities/alex-the-leukodystrophy-charity/christmas
https://www.dontsendmeacard.com/ecards/charities/alex-the-leukodystrophy-charity/christmas
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
Every contribution helps those affected find comfort, guidance, and hope when they need it most 💙
https://visufund.com/light-up-the-sky
#LightUpTheSky #AlexTLC
December 20, 2025 at 10:00 AM
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
Every contribution helps those affected find comfort, guidance, and hope when they need it most 💙
https://visufund.com/light-up-the-sky
#LightUpTheSky #AlexTLC
Our December Research Summary is available🔬📃
To view: https://alextlc.org/research/research-summary-december-2025/
To sign up to our mailing list: https://alextlc.org/newsletter-sign-up/
If you have any questions, please contact [email protected]
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
To view: https://alextlc.org/research/research-summary-december-2025/
To sign up to our mailing list: https://alextlc.org/newsletter-sign-up/
If you have any questions, please contact [email protected]
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
December 19, 2025 at 2:02 PM
Our December Research Summary is available🔬📃
To view: https://alextlc.org/research/research-summary-december-2025/
To sign up to our mailing list: https://alextlc.org/newsletter-sign-up/
If you have any questions, please contact [email protected]
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
To view: https://alextlc.org/research/research-summary-december-2025/
To sign up to our mailing list: https://alextlc.org/newsletter-sign-up/
If you have any questions, please contact [email protected]
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
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
We are also sending thoughts and hugs to Alex's Mum, our wonderful CEO Sara, and his brother Ayden 💖
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy
December 19, 2025 at 7:00 AM
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
We are also sending thoughts and hugs to Alex's Mum, our wonderful CEO Sara, and his brother Ayden 💖
#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy