PARENTS AS RARE – EPISODE 039 Chronically Simple & Simply Unbreakable – Kristy Dickinson Kristy Dickinson is a wife and mother of three, navigating life with multiple rare diseases....
ENERGY IN ACTION – EPISODE 038 Patient Led Trials Steve Smith is a rare disease advocate, father, and a fierce fighter for rare disease patients. EPISODE HIGHLIGHTS How...
ENERGY IN ACTION – EPISODE 037 The Patient Teacher Program Jake Athoe is a graduate of Boston University, where he earned a Bachelor of Arts in Biochemistry and Molecular...
PARENTS AS RARE – EPISODE 036 Parenting with VCP Disease – Nathan Peck Nathan Peck is a husband, dad, VCP patient and the CEO of Cure VCP Disease. Through...
ENERGY IN ACTION – EPISODE 035 The MitoSantas Program We’re in the Christmas spirit at MitoAction. Jeannie Freeman and Stephanie Tomlinson discuss the popular MitoSantas program. Tune in to...
ENERGY IN ACTION – EPISODE 034 Meet The Mito Girl Daniela Gallo shares her journey of living with mitochondrial disease while balancing motherhood, working, spreading awareness and caring for...
PARENTS AS RARE – EPISODE 033 Emma & Spencer – The Heart of Parents As Rare As a dad with a rare disease, I often think about the ways...
ENERGY IN ACTION – EPISODE 032 RNE Annual Conference Rare New England is a nonprofit in Massachusetts who serves the rare disease community in New England. Julie Gortze, Founder...
ENERGY IN ACTION – EPISODE 031 Making Mito Wishes Come True – A Partnership with Give Kids The World Village MitoAction and Give Kids The World have partnered to...
I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms and after the diagnosis...