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 2026
This year we want to spread vital awareness of leukodystrophy well beyond our Alex TLC community. Will you help us? Find out how below:
Wear it blue on socials
By sharing your blue outfit on your social media account(s) and a little bit about why you’re taking part, you’ll help more people learn about leukodystrophy and the support families need.
Choose any day in September and snap a selfie or get the whole family involved. You can be as casual or as creative as you like, anything goes (so long as it’s social media appropriate!)
Hold a Wear it Blue Day
Hold a Wear it Blue Day
Go one step further and raise funds for Alex TLC as well as awareness, by holding your own Wear it Blue Day in your school or workplace!
It’s simple, those wishing to take part don their blue outfits (silliness encouraged) and donate what they can to Alex TLC.
If you’d like to hold a Wear it Blue Day, simply click the link below.
Use our social media profile picture
You can help raise awareness by downloading our profile picture and applying it to your Facebook or Instagram account.
By displaying the image you will help to raise awareness of leukodystrophy within your own social networks.
Leukodystrophy Awareness Month 2025
In September 2026 we launched our ‘Life with leukodystrophy’ campaign to share the real stories of our community members in their own words.
35 locations lit up blue throughout the month in honour of all those affected by leukodystrophy.
We also launched our ‘Help Us Hit 100’ fundraising campaign, to encourage more monthly donations.
Leukodystrophy Awareness Month 2024
Last September was very special to Alex TLC; not only was it Leukodystrophy Awareness Month, it was also our 20th birthday!
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
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
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!
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.
