Frances Gourley performs Champ at Edgefield Oregon (with her mom, dad and band)

Our daughter Frances is featured on the latest release “Chris Black Changed my Life” many times and occasionally makes an appearance with the band in hopes of raising more awareness for her ultra rare neurodegenerative disease.

Singing and dancing provides Frances with such immeasurable joy and comfort, as she navigates her unique world.

We fight to create options for her to retain those kinds of skills and experiences because the idea of sitting back and watching that slip away is unfathomable and far too heartbreaking. This is Frances on stage with us for the first time having the time of her life.

Franceschangedmylife.com and curedhddsusa.org are a few ways in which the public can support our goal for research and treatment development and the ultimate desire to change the lack of healthcare options and support rare patients and families have endured for decades.

Thank you for watching, perhaps we’ll see you out there soon, - In the words of Frances, “I love you guys all”

Portugal. The Man &
Redray Fraizer, Lizzy Ellison, Machado, Vincent Larocchi

Filmed by
CJ Strehlow
Rahm Carrington
From C-Roll Productions

Screen visuals by
Justin Daashur Hopkins
Chris Levitus
Dilly Gent


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