We currently have 35 locations lighting up blue in September for Leukodystrophy Awareness Month!
If you’re planning on visiting a Light Up Blue location (listed below), we’d love to see your photos. You can either email us: info@alextlc.org or post to your social media and tag Alex TLC, along with the hashtags: #AlexTLC #LightUpBlue #Leukodystrophy.
Share your story with local press
Sharing personal stories of leukodystrophy is one of the most powerful ways to raise awareness of these life altering conditions.
If you live close to a Light Up Blue location and would like to share your story to help shine a light on the impact of leukodystrophy and the work of Alex TLC, please contact your local newspaper.
We have created the template below to assist you, it can easily be copied and pasted for you to edit. The text in bold capitals should be changed to personalise it.
Leukodystrophies are rare genetic disorders affecting the white matter in the brain and spinal cord. Leukodystrophies can cause symptoms such as impaired mobility, loss of vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills ( your brain’s ability to think, pay attention, process information and remember things). In some cases leukodystrophies may be life limiting.