Sara Hunt is the CEO and founder of ALD Life, a charity supporting sufferers of the rare and terminal genetic brain disorder adrenoleukodystrophy (ALD). Both of Sara’s sons were diagnosed with ALD in 2001. After failing to find adequate support, and with the encouragement of other ALD parents, Sara founded ALD Life in 2004. Following the death of Sara’s eldest son in 2012, Sara stepped down as Chair of ALD Life to be employed as its CEO. Since then she has been proactive in gaining management skills, and passed a Level 3 NVQ Certificate in Management in 2014. She also graduated successfully from the EUPATI (European Patients’ Academy) course to educate patient advocates in aspects of drug development and research in 2016. In addition she has developed a profitable business to support ALD Life’s core costs. Currently ALD Life employs a total of 20 staff – three of whom are directly affected by adrenoleukodystrophy. Sara is a member of the NHS Metabolic Clinical Reference Group as a patient voice representative. She also represents ALD Life as a member of Patient Advocates for New Born Screening (PANS), Specialised Healthcare Alliance and EURORDIS.

By |April 30th, 2018|Comments Off on SARA HUNT

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