View the webinar: Genetics & Reproductive Options
View the webinar: I Just Got Diagnosed, Now What?
View the webinar: Introduction to Adrenoleukodystrophy (ALD)
View the presentation of Partnering for Cures
Information on three additional types of Leukodystrophy have been added. Acute Disseminated Encephalomyelitis (ADEM) Aicardi-Goutieres Syndrome Cerebrotendinous Xanthomatosis (CTX) Select one the links above to read the information about each of the Leukodystrophies.
This 10 minute video explains what ALD is. Adrenoleukodystrophy is a devastating genetic disease that affects the myelin around neurons in the brain and spinal cord. Learn about the biology underlying the disease and what potential treatments may come from ALD research. This video was produced in collaboration with ALD Connect (www.aldconnect.org)
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 […]