Hear community perspectives on topics ranging from navigating a diagnosis to reflecting on clinical trial experiences.
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…
When the boys were diagnosed with DMD we understood that we needed to find a new home...
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...
My husband Keven and I have 3 kids and we’ve been homeschooling for more than 10 years. Here’s a little background of how we got here.