I'm the CEO and founder of ALD Life, a charity supporting sufferers of the rare and terminal brain disorder adrenoleukodystrophy (ALD) and associated condition adrenomyeloneuropathy.
I founded ALD Life in 2004 following the diagnosis of ALD in both my sons.
Although I have no professional experience in healthcare or the charity sector, I have used the passion inspired by my sons diagnoses, administrative skills and personal experiences of the ALD journey to develop ALD Life into the go to support organisation for ALD and AMN sufferers in the UK and worldwide.
Since ALD Life started, I have trained herself by passing a Level 3 NVQ Certificate in Management and graduated successfully from the EUPATI (European Patients Academy) course to educate patient advocates in aspects of drug development and research in 2016.
The charity runs five charity shops to support its charitable activities and is well respected as well as recommended by ALD and AMN specialists and researchers worldwide.
ALD Life is the only organisation providing patient support in the UK, and works closely with the NHS and peer organisations worldwide to promote best practice in condition prevention, treatment and care.