Alex TLC

Read the recent article about 'The Grey Zone project'
This research article will be used as part of our evidence to add ALD to the newborn screening programme in the UK 👣
Find out more: https://alextlc.org/news/evidence-ald-newborn-screening-campaign/

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

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

We will continue to work towards MLD and ALD being added to the list of conditions screened for at birth 💙 We will do this by attending relevant meetings and presenting to share our voice about the important of NBS: https://alextlc.org/news/mld-newborn-screening-decision/

#NewbornScreening #MLD

It's #ChildrensMentalHealthWeek

This year's theme is "This is my place" encouraging inclusive and nurturing environments where children and young people feel they belong.

#AlexTLC #CMHW

BEACONS leading investigators have announced two major milestones in an NIH-funded research effort to evaluate genomic newborn screening
To find out more: https://rarerevolutionmagazine.com/beacons-selects-seven-sites-finalises-gene-list-for-genomic-newborn-screening-study/
#NewbornScreening

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

February is #PayrollGivingMonth!

We currently have 4 wonderful donors who give via Payroll Giving, like Colin:

"We have attended three community weekends and seeing how important this charity is to so many families, the decision to give was easy!"

https://alextlc.org/news/payroll-giving-month/

Want to be more sustainable this #ValentinesDay and support our vital work? Send an eCard from #DontSendMeACard ❤️

Take a look at our designs: https://www.dontsendmeacard.com/ecards/charities/alex-the-leukodystrophy-charity/valentines-day

#AlexTLC

3 weeks until #RareDiseaseDay 2026!

This year’s theme is 'Equity for Rare'. What does Equity for Rare mean to you? Maybe you've experience inequity and want to voice your concerns . Send a short video, a photo with a quote, or a voice recording to info@alextlc.org

Ahead of the government’s plans to reform SEND, the Disabled Children’s Partnership is calling for a system that works for children, young people and families - not against them

#SEND #FightForOrdinary

Genetic Alliance's report sets out how PPIE can be more meaningfully embedded across the research system. The report is grounded in the experiences of rare condition researchers with eight recommendations set out which out focus on what needs to change: https://alextlc.org/news/ppie-research-report/

Today our Director of Support, Karen, is attending the SHCA quarterly meeting
Dr Graham Shortland, Vice Chair of the National Screening Committee, will discuss his involvement in new UK-wide newborn blood spot screening programmes and future of UK newborn screening 👣
#NewbornScreening #ScreenOurBoys

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

Our lucky 50/50 Cash Draw winner for February has won £185.50, with number 135!

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

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

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

Do you have experience in Charity Retail or Communications?

We are looking for Trustees to join our dedicated team! This is a voluntary, remote role, 6 hours quarterly.

Find out more: https://alextlc.org/support-us/volunteer/trustee-opportunities/

#AlexTLC #HelpToCope #HelpToHope #Trustees

"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

The Yaya Foundation for 4H Leukodystrophy are holding a virtual conference every week until 1st March.

The series of sessions are are free to attend but you must register to receive the zoom link to join.

https://alextlc.org/news/4h-leukodystrophy-virtual-conference/

It's #PayrollGivingMonth!

Payroll Giving, also known as Give as You Earn, is a simple and cost-effective way to donate from your gross pay.

We currently have 4 wonderful donors who give via #PayrollGiving, could you help us increase this number?

https://alextlc.org/support-us/payroll-giving/

It's Dignity Action Month! An annual opportunity for health and social care workers, and members of the public to uphold people's rights to dignity.

This year's theme is 3 Little Deeds:

🔹 Spread kindness
🔹 Respect and compassion
🔹 Promote Dignity

#DignityActionMonth

Will you join Team Alex for this year's Great North Run? 🏃‍♀️

We only have 3 places left, so don't delay!

Find out more: https://alextlc.org/fundraising-event/great-north-run/

Please share, and let all your running friends know to help us fill our places.

#AlexTLC#GreatNorthRun #RunningForCharity

This month we are sharing about Canavan Disease 💙

For condition information please visit: https://alextlc.org/condition/canavan-disease/

We support all leukodystrophies - for support email info@alextlc.org

#AlexTLC #CanavanDisease #VanBogaert-BertrandDisease

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

Dr Lydia Green, Paediatric Neurologist, provided an update about the IWMD service
Karen, our Director of Support, presented about the support we provide
And virtual presentations from Dr Rahul Singh about the IWMD registry & Dr James Poulter discussed genetic testing
#AlexTLC #Leukodystrophy #BPNA

It's #ParentMentalHealthDay

Parenting with the added challenges of #leukodystrophy can affect your mental health. We offer a free counselling service to all our community members over the age of 18.

Find out more: https://alextlc.org/how-we-support-you/counselling-service/

#AlexTLC

The Inflatable 5k is back, and it’s going to be bigger, bouncier and better than ever! What's more, you can get up to 50% off with their early bird offers, so book soon!

Find your nearest event: https://www.ukrunningevents.co.uk/events/inflatable-5k

#alextlc #funrun #inflatable5K #familyfun

Our Director of Support, Research Analyst and Dr Lydia Green (Leeds NHS England paediatric IWMD service) are at the BPNA conference - presenting their poster which highlights experiences of those using one of the three IWMD paediatric centres in England
#AlexTLC #Leukodystrophy #BPNA #IWMDService

Please join us in wishing our wonderful CEO and founder of Alex TLC, Sara, a very happy birthday today! 🥳🎈🍰

Our Director of Support and Research Analyst are attending the BPNA conference this week 💬

Attending conferences like British Paediatric Neurologists Association are important as they help raise awareness of leukodystrophy and Alex TLC with paediatric neurologists 💙

#AlexTLC #Leukodystrophy #BPNA

Just one month to go until #RareDiseaseDay 2026!

This year’s theme is 'Equity in Healthcare'. Those with leukodystrophy deserve fair access to diagnosis, treatment and support, but this is rarely the case.

Send a short video, a photo with a quote, or a voice recording to info@alextlc.org