Episode 49: Donavon Decker, LGMD2D, and his participation in Gene Therapies

On episode 49 of Beyond Labels & Limitations, John Graybill talks with Donavon Decker, who has LGMD2D. Donavon comes from a family of 8 with 5 of them being diagnosed with LGMD2D. His unaffected sister later had 2 children who were diagnosed with LGMD2I. Donavon also shares how the LGMD2D population were the first to participate in gene therapies, and he shares how the trial he was in showed promise. His sister, June Burney, who also has LGMD2D, was a part of a study in 2015 using the AAV-One time treatment. Donavon shares how his sister improved while in the study and up to 1.5 years after the study was concluded. Unfortunately, she began to lose what she gained shortly afterwards.  ______________________________ Connect with John: Subscribe on YouTube Visit the Website Email: [email protected] ______________________________ "Desire to Inspire" TKG