In 2004 Alex TLC became a registered charity and is now an internationally recognised centre of excellence, the only UK charity providing invaluable support and information for everyone affected by leukodystrophy. Working with stakeholders such as the NHS, Alex TLC delivers a diverse portfolio of support activities, raises awareness of these rare yet devastating conditions and promotes research.
Determined not to let leukodystrophy defeat their sense of family, Sara spent the next 12 years making the best of their new “normal” as well as running Alex TLC.
Nevertheless, the inevitable was not to be escaped, and she lost her eldest son, Alex in December 2012 – you can read their story here.
Following Alex’s death, Sara resigned her position as Chair, and was formally employed as the Chief Executive Officer in 2013.
In 2003 Karen Harrison phoned Sara for support, after her own boys were diagnosed with leukodystrophy. Within an hour of speaking on the phone, they had formed an instant bond and became firm friends.
Karen has supported Sara throughout Alex TLC’s journey, and formally joined the charity in 2013 as the Support Services Manager. They are a dynamic team, complementing each other’s skills perfectly to maintain Alex TLC’s position as the lead organisation for the UK leukodystrophy community.
You can read Karen’s story here.
