September is….Leukodystrophy Awareness Month

What is Leukodystrophy Awareness Month?

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. In 2021 we shone a light on the different types of leukodystrophy and last year our focus was on getting to know our community members.

Please see below to find what we will be doing this year and how to get involved. Thank you so much for continuing to help us raise much-needed awareness of leukodystrophy 💙

Alex - The Leukodystrophy Charity

Leukodystrophy Awareness Month 2023

Hospice Grants

As part of Leukodystrophy Awareness Month we would like to recognise the amazing part hospices play in helping care for loved ones with leukodystrophy and will be awarding two grants of £1,000 each.

We are asking for nominations of hospices that have provided outstanding care for leukodystrophy patients in the UK. If you would like to nominate a hospice please email and tell us in your own words why they deserve an award, and the difference their care has made for you and your loved one.

The deadline for nominations is 9am on Monday 16th September 2023. Grant recipients will be announced at the end of September.


Walk ‘n’ Roll

Our Walk ‘N’ Roll campaign is focused on getting our community and supporters moving in a way that works for them.

You pick the distance and route, complete your challenge on a particular day, or throughout the whole month. Whether you walk, push or roll 1, 10, or 100 miles, you will be making a huge difference to those affected by leukodystrophy.

Find out more:


Leukodystrophy ACTIVITIES Month

We are planning the focus of the awareness month to be activities that our community enjoy doing to enrich their lives. These can be active (e.g. walking) or non-active (e.g. reading). We hope that it will help to promote a focus of inclusion by demonstrating how activities can be adapted to a person’s abilities. If you’d like to share an activity, please email:, and don’t forget to include a photo!

To see all the activities that have been shared so far on our social media pages, please visit: Leukodystrophy ACTIVITIES Month Posts

Light Up Blue

We are aiming to Light Up Blue buildings around the UK to help raise awareness of leukodystrophies. We already have 18 buildings that are going to be participating, and are hoping to contact local press too – if you live near any of the below locations, and would like to share your story with local press, please email us at:

Do you have a building local to you that could light up blue for an evening, for Leukodystrophy Awareness Month in September?

If you regularly see a building with coloured lights that you think could get involved, please email us at: and we will contact them.

Social Media Frame

Download our social media frame and help spread leukodystrophy awareness far and wide:

Display our Poster

Download our poster to print and display in your window at home by clicking here . If you would like a poster printed and sent to you instead, please email:

Alex - The Leukodystrophy Charity

Leukodystrophy Awareness Month 2022

In 2022 we wanted to create a month of Leukodystrophy Awareness. 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 used hashtags to help improve our reach: #alextlc #leukodystrophy #turnseptemberblue

We also shared a Leukodystrophy Awareness Month Social Media Frame and asked everyone to add it to their profile picture.


We 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.

We held a leukodystrophy awareness month raffle to raise vital funds and help us continue to support those affected by leukodystrophies. We had a range of great prizes and announced the winners virtually.


We set up a fundraising page to raise money to help make a difference to the lives of those affected by leukodystrophy. We are the only charity in the UK that provides invaluable support for anyone with a leukodystrophy, their families, and carers.


Alex - The Leukodystrophy Charity