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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
December 3, 2025 at 7:00 AM
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Our April Research Summary is available🔬📃

To view: alextlc.org/research/res...

We have a database previous research summaries on our new website: alextlc.org/research-and...

To sign up to our mailing list: alextlc.org/newsletter-s...

#alextlc #helptocope #helptohope #leukodystrophy
April 22, 2025 at 12:03 PM
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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
December 8, 2025 at 5:01 PM
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Huge congrats to Emma (pictured right) who won £183 in our November 50/50 Cash Draw! 💙

Sign up now to avoiding missing out on the December draw 🎅

https://alextlc.org/donate/5050-cash-draw/

#AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #Win

November 16, 2025 at 7:00 PM
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The meeting is held by Karen Harrison, Director of Support, and Suzanne Gosney, Engagement and Communications Manager.

If you'd like to attend or you have any questions, please contact info@alextlc.org

#alextlc #helptocope #helptohope #leukodystrophy
April 28, 2025 at 12:03 PM
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Every fundraiser has a story 💙

Meet the amazing people who go above and beyond to support Alex TLC, and discover what drives their mission on our Supporter Stories page:

https://alextlc.org/fundraise/supporter-stories/

#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #Fundraising
November 8, 2025 at 11:00 AM
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It's #WorldChildrensDay

We'd like to take this opportunity to celebrate all the amazing children in our Alex TLC community 💙

#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #CareAboutRare
November 20, 2025 at 7:00 AM
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We are here to support individuals and families affected by all types of leukodystrophy, get in touch by emailing info@alextlc.org

#alextlc #alexanderdisease #leukodystrophy #helptocope #helptohope
May 14, 2025 at 2:34 PM
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Don't Scrap it, donate it!

Charity Car UK take the hassle out of getting rid of your car and they pass the value to us.

Find out more: www.charitycar.co.uk/alex-tlc

#AlexTLC #HelpToCope #HelpToHope #CharityCar
November 11, 2025 at 6:01 PM
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Our November News Round-Up is out today 📩
We are sharing about conferences we've attended, our light up the sky campaign, joining the IWMD registry and gift vouchers for our 50/50 draw 💙
Join our mailing list: https://alextlc.org/newsletter-sign-up/
#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
November 28, 2025 at 1:01 PM
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We are here to support you on your leukodystrophy journey 💙

Our team is here to provide information and advice about leukodystrophy. And our counsellor, Mel, to provide counselling sessions and wellbeing calls

Need support? Email info@alextlc.org 📩

#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
November 10, 2025 at 3:02 PM
alex-tlc.bsky.social
Could you donate to our Easter Basket? 🐣🐰

Every egg added goes towards our Community Weekend Appeal, helping us continue to provide free, annual Community Weekends for anyone affected by #leukodystrophy.

visufund.com/alex-tlc-eas...

#alextlc #helptohope #helptocope #easter #easterbasket
April 21, 2025 at 10:17 AM
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To find out more, visit the peer support page on our website: alextlc.org/how-we-suppo...

If you would like to talk to other families or individuals, please email info@alextlc.org

#alextlc #helptocope #helptohope #leukodystrophy
April 16, 2025 at 3:58 PM
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Our lucky 50/50 Cash Draw winner for November has won £183, with number 12!

Sign up now to be in with a chance of winning in the December draw 💰 🎅

https://alextlc.org/donate/5050-cash-draw/

#AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #CashPrize #Win
November 4, 2025 at 7:01 PM
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Our October News Round-Up is out today 📩

This month we will be sharing about our Community Weekend 2025 photos and presentations, festive campaign and much more 💙

To join our mailing list: https://alextlc.org/newsletter-sign-up/

#AlexTLC #Leukodystrophy #HelpToCope #HelpToHope
October 30, 2025 at 5:01 PM
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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
December 1, 2025 at 6:01 PM
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We have 2 numbers in our 50/50 Cash Draw which haven’t been renewed, and we’d love to fill them to offer a prize of £176 in the June draw 💰

alextlc.org/donate/5050-...

#alextlc #helptocope #helptohope #leukodystrophy #cashdraw #charitydraw #cashprize #win
May 26, 2025 at 7:20 AM
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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
December 11, 2025 at 12:01 PM
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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
April 15, 2025 at 7:50 AM
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Our Community Weekend is considered a lifeline by many, and gives them the opportunity to meet others who truly understand what they are going through.

Please give to our Community Weekend Appeal today:

alextlc.org/donate/commu...
#alextlc #helptocope #helptohope #leukodystrophy
May 16, 2025 at 9:23 AM
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Our October Research Summary is available🔬📃

To view: https://alextlc.org/research/research-summary-october-2025/

To sign up to our mailing list: https://alextlc.org/newsletter-sign-up/

If you have any questions, please contact info@alextlc.org

#alextlc #helptocope #helptohope #leukodystrophy
October 28, 2025 at 6:01 PM
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ALSP is often misdiagnosed as other conditions such as Multiple Sclerosis and Frontotemporal dementia, so awareness is vital for affected families.

Find out more: www.sistershopefoundation.org

#alextlc #helptocope #helptohope #leukodystrophy #ALSP #RareDisease #RareDiseaseAwareness
Sisters' Hope Foundation ALSP
Patient advocacy group for those diagnosed with ALSP, adult-onset leukoencephalopathy with axonal spheroids and pigmented glia, HDLS and CSF1R related disorders. Support, information and resources fo...
www.sistershopefoundation.org
May 2, 2025 at 1:04 PM
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Huge thanks to everyone who's signed up to be a regular donor. We have increased our monthly donations from 26 to 43! 🎉 Could you help us hit 100?

Sign up here: https://alextlc.org/help-us-hit-100/

#AlexTLC #HelpToCope #HelpToHope #Leukodystrophy #HelpUsHit100
November 15, 2025 at 11:00 AM
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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
December 15, 2025 at 3:01 PM
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To join: www.facebook.com/groups/alext...

#alextlc #helptocope #helptohope #leukodystrophy
April 17, 2025 at 1:44 PM