An Interview With Seda Filenko As one of the first families dosed with gene therapy, what were some of your thoughts, feelings, hopes, fears, anything you really considered as you made the decision to enroll in the trial? The idea…

May is Ehlers Danlos Syndrome (EDS) Awareness Month, so today I’m sharing my experience with the condition. I have hypermobility type EDS (hEDS), but there are 12 other types of EDS...

The first year after our son’s Duchenne diagnosis was difficult, confusing, and frustrating. We didn’t know where to turn, what questions to ask, and how to advocate for our son in a real and meaningful way...