Skip to main content
News & Events


A Visionary Leader with a Heart of Gold

With her unassuming charm and authenticity, Tracy Milne is much beloved in both our US- and European-based patient family communities. She is usually their first point of contact as they navigate the often daunting path to and after CLA diagnosis since she manages LGDA’s patient Facebook support groups. However, her impact and role in the lives of the global community of CLA patient families has been far greater than most realize.

Born in Leiston, England, as a teenager Tracy would leave friends and family to move away to Aberdeen, Scotland, her current home, with her partner, Mark. She admitted that she was “very, very young” and that theirs “was a love affair.” A few short years later, they married and had a little boy, Alfie. As a 1 year old, Alfie began experiencing tremendous pain and shortly thereafter was diagnosed with a CLA. She felt lost and needed to get back some control, which is why she first became involved in LGDA 15 years ago. She describes her attendance at LGDA’s in-person conference back in 2014 as “a magical memory.” A few years prior, she’d started her own foundation in Alfie’s honor which was buoyed financially by family and friends. Tracy recalls, “We were told he probably wouldn’t reach his fifth birthday. [...] But he did. He did reach his fifth birthday. After that, you know, it has been a blessing. We just have to keep focusing on the here and now,” chuckling, she added, “And now, he’s 15 with a teenager attitude.”

Tracy helped raise almost half a million pounds in support for CLA-specific research throughout her tenure as her foundation’s director. Since its dissolution, she has remained an incredibly engaged member of our community through her membership on LGDA-Europe’s board of directors and as Programs Assistant for LGDA-USA. One would think that a woman of such tenacious vision might have little time for much else, but Tracy enjoys singing alto as part of the UK’s award-winning Rock Choir. A local contemporary chorale group with chapters throughout that country, the Rock Choir has released albums and is often a fixture on the UK social scene.

From all of us here at LGDA, brava Tracy!