Experiences with

Leukodystrophy

I also discovered I have Leukodystrophy at the same time. I am assuming the vision issue is due to the tumor, but have as yet not heard of anyone else experiencing it. It stops me from cycling, discourages me from walking, I even get if mowing the lawn. Stress can also bring it on.

It's great to see our incredible community connecting in our online group 💙 We now have 54 members who have joined 💫 A space for individuals affected by leukodystrophy and their family members, friends, and carers to have conversations Come and join the group by visiting: https://www.facebook.com

The Leukodystrophy Support group will be closing on 31st December 2022. We have created our own Facebook Group called ‘Alex TLC Community’. We hope that having our own dedicated group on Facebook will ensure more of our community are able to be involved in conversations and discussions.

The Leukodystrophy Support group will be closing on Saturday 31st December 2022. We have created our own Facebook Group called ‘Alex TLC Community’. We hope that having our own dedicated group on Facebook will ensure more of our community are able to be involved in conversations and discussions.

We are sad to announce that on Saturday 31st December 2022 we will be closing the Leukodystrophy Support group on Health Unlocked. However, we have some exciting news, we have created our own Facebook Group called ‘Alex TLC Community’.

A warm welcome to all those just joining our Leukodystrophy Support Group 🤗 Please feel free to introduce yourself in the comments below and say hello to everyone in our community 👋 Comment on our existing posts or write your own posts and questions 💬 If you have any questions, please feel free

Join Karen and Suzanne from Alex TLC on Tuesday June 21st 13:00-14:00 for a community call on zoom💙 Please be aware that carers and family members are also welcome to join. If you would like some further information or have any questions, then please contact suzanne@alextlc.org

Hi All, We have a general catch up tomorrow, Wednesday 20th April, from 18:00-19:00 for men with mild symptoms of Leukodystrophy. This will be held on Zoom in a group setting with other Alex TLC beneficiaries.

We are asking you 'We are hoping to offer grants to help individuals and families affected by Leukodystrophy to access counselling. Would you be interested?'

The drug, Libmeldy, [i]from WIkipedia[/i]: https://en.wikipedia.org/wiki/Atidarsagene_autotemcel "Atidarsagene autotemcel, sold under the brand name Libmeldy, is a gene therapy treatment for metachromatic leukodystrophy (MLD) developed by Orchard Therapeutics.

I have a VUS for vascular disease of white matter in brain associated with a very rare leukodystrophy, written off to age(64), which I contend would have been there 30 years ago had I had a brain scan then. So, I believe central hypo is feasible, both by test results and family history.

We are looking for 12 individuals or families who would like to share their leukodystrophy story, and the impact it has over the festive period. Your stories will be shared on social media as part of our 12 days of Christmas awareness campaign in December.

Please take a minute to complete our poll on Leukodystrophy Support and let us know, your feedback is important in shaping how the registry will work. For any questions or further information, please contact suzanne@alextlc.org

September is Leukodystrophy Awareness month. Our aims during this month are to spread awareness of the different types of Leukodystrophy and reach new affected individuals and their families.

Please be aware that this meeting may have parents with children who have a variety of symptoms and some with more advanced symptoms of leukodystrophy than others.

The ULF just posted a recording of the ALD/AMN portion of their yearly conference. Lots of good presentations on various topics. Detailed results of the MIN-102/Leriglitazone trial start at timestamp 55:00 https://www.youtube.com/watch?v=G8BgkKi2JS8&t=4417s

Please remember that Alex The Leukodydstrophy Charity (Alex TLC) has a website with information about all types of Leukodystrophy: Conditions - Alex - The Leukodystrophy Charity (alextlc.org) They also provide support and advice to individuals affected by a Leukodystrophy and their families.

Please remember that Alex The Leukodydstrophy Charity (Alex TLC) has a website with information about all types of Leukodystrophy: Conditions - Alex - The Leukodystrophy Charity (alextlc.org) They also provide support and advice to individuals affected by a Leukodystrophy and their families.

The Alex TLC Digital Community Weekend brings together leukodystrophy sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.

The Alex TLC Digital Community Weekend brings together leukodystrophy sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.