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 2025
This year our theme is ‘Life with Leukodystrophy’. We are hoping to raise awareness of how life is living with a leukodystrophy by sharing stories, photos and videos from our community members.
There are lots of ways to get involved this September, find out what’s happening below:
Life with leukodystrophy
Leukodystrophies are a devastating group of conditions that can affect men, women, and children of all ages, backgrounds, and ethnicities. It doesn’t discriminate and affects individuals and families from all walks of life.
Our campaign is dedicated to sharing the journeys of individuals and families affected by leukodystrophy. With an aim to shine a light on the far-reaching impact of leukodystrophy and the challenges faced by our community members.
We will be sharing the page in September.
Light Up Blue
We are asking for buildings to light up blue in September for Leukodystrophy Awareness Month!
There are lots of locations lighting up so far. To view the locations lighting up: Light Up Blue 2025
If you’re planning on visiting a Light Up Blue location, we’d love to see your photos. You can either email us: info@alextlc.org or post to your social media with the hashtags: #AlexTLC #LightUpBlue #Leukodystrophy.
Social Media Banner
You can help raise awareness by downloading our banner and applying it to your Facebook cover photo.
By applying the banner you will help to raise awareness of leukodystrophy within your own social networks.
To download: LAM25 banner
Help us hit 100!
Those affected by leukodystrophy often face fear, isolation, and uncertainty. Right now, just 26 people give regularly to help us stand beside them. We want to grow that number to 100 regular donors — and we’re asking you to join us.
Regular donations cut down on administration costs and provide us with a reliable income to plan our future projects and services. Even a small amount each month really makes a big difference to our work.
Print and display our poster
You can help raise awareness of Leukodystrophy Awareness Month by printing and displaying our poster.
You could ask your workplace whether it could be displayed in your break room. Or speak to someone at your local library, coffee house or gym if they would mind it being put up.
We hope by displaying the poster in community locations will help to increase awareness in the general public.
To download: LAM poster
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.
