Leukodystrophy Awareness Month takes place every year throughout the whole of September. It is a time for everyone affected by a leukodystrophy to come together and raise awareness about these devastating rare conditions. It provides an opportunity to raise awareness of leukodystrophy, including the symptoms of leukodystrophy, the impact of the condition on individuals and families, and what we do as a charity.
Each year we roll out a different themed campaign for people to get involved with. Our previous themes have included shining a light on the different types of leukodystrophy and getting to know our community members.
Leukodystrophy Awareness Month 2024
This September was very special to Alex TLC; not only was it Leukodystrophy Awareness Month, it was also our 20th birthday! Below are some of the ways our community members got involved this September:
Wear It Blue
As many of you probably know, blue is the official leukodystrophy awareness colour, so we asked you to join in the celebrations by holding a ‘Wear it Blue Day’ at your school or workplace.
It was simple, those wishing to take part put on their blue get up (silliness encouraged) and donated what they could to Alex TLC.
Thank you to everyone who got involved 💙
20 years of Alex TLC
Our 20th birthday was on Monday 23rd September. We posted on our social media throughout the whole of September looking back over the last 20 years and sharing memories with our community.
You can view the posts shared by visiting: 20 years of Alex TLC
Light Up Blue
We asked for buildings to Light Up Blue for Leukodystrophy Awareness Month in September. As it was our 20th birthday on the 23rd September we asked buildings to light up blue for that one night.
We had 29 buildings involved!
Thank you to everyone who lit up blue for us and helped raise awareness of leukodystrophy 💙
How Alex has helped you
We asked for individuals and families to let us know in 20 words how Alex TLC has helped them. We shared these on our social media throughout September.
You can view the words shared by visiting: LAM 20 words
£20 for our 20th birthday
We asked for people to donate £20 for our 20th Birthday!
However any amount was welcomed; donations are so important to us as they help us continue our vital work.
Social Media Frame
Lots of our community helped to raise awareness by adding our Leukodystrophy Awareness Month social media frame to their profile picture.
Thank you to everyone who got involved 💙
Leukodystrophy Awareness Month 2023
We wanted to get our community involved by sharing about activities they enjoyed doing to enrich their lives. These were both active (e.g. walking) or non-active (e.g. reading). We hoped that it would help to promote a focus of inclusion by demonstrating how activities can be adapted to a person’s abilities.
We also held a Walk ‘N’ Roll campaign which was focused on getting our community and supporters moving in a way that works for them. We asked people to pick the distance and route, complete their challenge on a particular day, or throughout the whole month. Whether they walked, pushed or rolled 1, 10, or 100 miles, they helped make a huge difference to those affected by leukodystrophy.
We aimed to ‘Light Up Blue’ buildings around the UK to help raise awareness of leukodystrophies. We had over 35 buildings who lit up blue throughout September.
Leukodystrophy Awareness Month 2022
We wanted to create a month of leukodystrophy awareness throughout the whole of September. We asked our community to share about their life living with leukodystrophy so we could spread the word. We asked them to share 2 posts a week based on our themes below on the specified dates each week.
We also asked everyone to ‘Wear it, share it’ this September. This involved taking a photo of yourself wearing or using an item of merchandise from the Alex TLC shop and sharing it on socials and tagging the charity.
