A list of Frequently Asked Questions for families regarding the current COVID-19 crisis and managing ALD.
This 20 minute video explains the physical limitations of an adult with AMN, in terms of gait and balance, and further highlight the need for physical therapy and exercise to maintain strength and mobility. Two sequences of conditioning and fitness exercises are shown, which equip patients with simple routines they can perform at the gym, or at home.
The European Leukodystrophy Association announces the launch of a clinical trial for adult patients suffering from adrenomyeloneuropathy. Thanks to the generosity of their donors, the ELA have allocated 800,000 Euros to completely fund a new clinical trial to evaluate the effects of a new molecule on patients suffering from adrenomyeloneuropathy (AMN). Dr Frederic Sedel’s research work to which ELA contributed […]
Gene Therapy Study Seeking Participants with Childhood Cerebral Adrenoleukodystrophy An international clinical research study, called the Starbeam Study, is now enrolling boys, aged 17 and younger, who have been diagnosed with Childhood Cerebral Adrenoleukodystrophy (CCALD). CCALD symptoms usually occur in early childhood and progress rapidly, if untreated, ultimately leading to death. CCALD is a rare, genetic brain disorder that occurs […]