We are looking for individuals to be part of the Alex TLC Steering Group. The Steering Group has previously given us valuable feedback on resources and information we have provided within our charity. This feedback has included ideas of what would be helpful for others to know and ensuring the information we have produced is understandable. We are currently developing new services and projects, including an exciting opportunity to work directly with the NHS coming up this summer.
We are looking for individuals who are affected by a Leukodystrophy, or carer for/partner of someone who is affected. We are hoping to get involvement of individuals affected by all types of Leukodystrophies, including the rarer conditions, so we can ensure our group is reflective of the whole Alex TLC community.
If you are interested in being involved or have any questions, then please contact suzanne@alextlc.org for further information.