Please join us in saying a huge thank you to Gregor, who raised an incredible £1,810 for Alex TLC in memory Cameron Harrison, by completing the 20 mile Kingston Break-fest Run. 💙🏃
Thank you, Gregor. What an amazing achievement!
#AlexTLC #HelpToCope #HelpToHope #BreakfestRun
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
Some of you may know the wonderful Jade, the IWMD Service Coordinator based in Leeds Children’s Hospital. She bravely took on a 100ft Abseil off the Falkirk Wheel on Sunday and has raised the fantastic sum of £275!
https://www.justgiving.com/page/jade-belton-1
Thank you, Jade 💙
#AlexTLC
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
Please join us in saying a massive thank you to All Things Darts 🎯 - who run a charity page, where all money raised is donated to good causes.
We are delighted to have been chosen this month and so grateful to have received the amazing sum of £2902.67 💙
#AlexTLC #HelpToCope #HelpToHope
From today until 5th April, Easyfundraising are offering you the chance to enter Alex TLC into a daily prize draw to win a £100 or £200 donation, plus the grand prize draw to win one of five £1,000 donations.
www.easyfundraising.org.uk/clue-the-egg-hunt/
#AlexTLC #EggHunt
It's #WomensHistoryMonth
This month, we're celebrating some of the amazing women making an impact across the leukodystrophy community. Find out more about Dr Green and many other incredible women by following the link below:
https://alextlc.org/news/womens-history-month/#lg
#AlexTLC
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
Please join us in wishing Jade, Darren, Aine and Donna good luck this morning, as they descend 100ft from the famous Falkirk Wheel for Alex TLC!
Good luck guys, you've got this!
#AlexTLC #FalkirkWheel
Have your say on supporting Alex TLC!
Times are tough for everyone and we want to make sure we’re doing everything we can to make it easier and more rewarding to support us.
We'd really appreciate it if you could complete this quick survey:
https://form.typeform.com/to/hotcyXgW
#AlexTLC
It's #WorldPoetryDay
Aisling Finn has written two poetry books about her journey as a mother of a child with leukodystrophy.
'After' is taken from Motherhood, Plot Twist.
#AlexTLC #HelpToCope #HelpToHope #NationalPoetryDay
Huge congrats to Carlie who won £188.50 in our March 50/50 Cash Draw! 💙
“This is the 2nd time I’ve won, thank you so much. It’s only £12 a year, so sign up today and be one of those lucky winners, plus it goes towards an amazing charity”
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #Win
It's #BrainAwarenessWeek 🧠
We have created a simple video to explain what leukodystrophies are and the variety of symptoms they cause.
Please share to spread vital awareness 💙
#AlexTLC #HelpToCope #HelpToHope
We need to fill just 20 entries to reach a £200 prize pot for April! Can you help us?
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 #HelpToCope #HelpToHope #CashPrize #Win
Sending love to our community this Mother's Day 💙
Our Counsellor, Mel, shared some advice earlier in the week for those who are struggling. You can read it here: https://alextlc.org/news/mothers-day-message/
#AlexTLC #HelpToCope #HelpToHope #MothersDay
Left it too late to buy a Mother's Day card for tomorrow? Don't panic!
For a small donation to Alex TLC, you can send an eCard ✉️ by visiting:
www.dontsendmeacard.com/ecards/charities/alex-th...
#AlexTLC #MothersDay #CharityECards
There’s just 7 months until our next Community Weekend 💙
Your support is vital to ensure we can continue to host these vital events; please donate if you can:
https://www.justgiving.com/campaign/alextlc-cw
#AlexTLC #HelpToCope #HelpToHope #CommunityWeekend #Donate
March is #FreeWills month
With FreeWills, you can create a will for free:
alextlc.org/donate/ways-you-can-dona...
If you decide to leave a gift in your Will to us, you can play a crucial role in helping us continue supporting families like Nico's.
#AlexTLC #LegacyGiving
As Mother's Day approaches, it can lead to mixed and complicated feelings for many. Our Counsellor, Mel has some comforting advice for those who need it:
https://alextlc.org/news/mothers-day-message/
#AlexTLC #HelpToCope #HelpToHope #MothersDay
Our lucky 50/50 Cash Draw winner for March has won £188.50, with number 302!
Sign up now to be in with a chance of winning in the April draw 💰 🐣
https://alextlc.org/donate/5050-cash-draw/
#AlexTLC #HelpToCope #HelpToHope #CashDraw #CharityDraw #CashPrize #Win
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
Please join us in wishing Gregor good luck this morning, as he takes on the Kingston Break-fest Run, in memory of Cameron Harrison 💙
https://www.justgiving.com/page/gregor-smith-1
Thank you, Gregor!
#AlexTLC #HelpToCope #HelpToHope #KinstoneBreakFest #Running #Fundraising
Next Sunday 15th March is Mother's Day.
Why not send an eCard this year, and donate the cost of a card and postage to Alex TLC 💙
www.dontsendmeacard.com/ecards/charities/alex-th...
#AlexTLC #MothersDay #CharityECards
It's National Employee Appreciation Day!
We'd like to take this opportunity to thank all of our amazing Alex TLC staff for their hard work and dedication.
#AlexTLC #EmployeeAppreciation
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
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
Our CEO, Sara Hunt, and Research Analyst, Kristina Backlund a Patient and Public Involvement and Engagement (PPIE) in Action meeting yesterday
Focus on what PPIE means in endocrine research, how to manage expectations of public & scientists, and what patient support groups should ask for
#AlexTLC
