This video shows the importance of ALD newborn screening, and demonstrates the course of ALD without early detection.
Together We Can #SaveTheBoys
What is ALD?
Newborn Screening Can #SaveTheBoys
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CT Newborn Screening Status on FOXCT
Gene Therapy- The Time is Now: Nick Leschly of bluebird bio at TEDxBoston
Lorenzo by Phil Colins
Did You Know…? In 1996, Phil Collins released the song Lorenzo on his album Dance Into The Light. This song was written by Michaela Odone, a co-founder of The Myelin Project with her husband Augusto, as a poem to her son Lorenzo, who was born with ALD. Lorenzo requested for Phil Collins to sing and record the song. Phil immediately answered Michaela and Lorenzo’s wishes and set the lyrics to music. Michaela and Augusto have made significant contributions to the ALD community by developing the treatment Lorenzo’s Oil and founding The Myelin Project to encourage more research about ALD.
ALD Connect Doctor Patient Webinar #1: ALD
ALD Connect Doctor Patient Webinar #2: I Just got Diagnosed, Now What?
ALD Connect Doctor Patient Webinar #3: Genetics & Reproductive Options
ALD Connect Doctor Patient Webinar #4: Implementing Newborn Screening for ALD