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Resource Type: Podcasts


Meeting My MELAS Mito Friend

  PARENTS AS RARE – EPISODE 070 Meeting My MELAS Mito Friend – Elizabeth Wood I met Elizabeth Wood, a fellow mito patient, through connections at Mito Action. Elizabeth...


Granting Wishes One Trip at a Time

ENERGY IN ACTION – EPISODE 069 Give Kids the World with Justin Kiser Justin Kiser is a dad to Riley, who is five years old and has a rare...


Live from the 2022 Global Genes Rare Patient Advocacy Summit with Tim McLerran, Head of Product, Medical Intelligence One, Inc

PARENTS AS RARE – EPISODE 068 Special Episode – Live from the 2022 Global Genes Rare Patient Advocacy Summit with Tim McLerran, Head of Product, Medical Intelligence One, Inc....


What’s It Like Being A Research Patient with the UDN? Ted Perron Shares his Story

ENERGY IN ACTION – EPISODE 067 What’s It Like Being a Research Patient with UDN – Ted Will Tell You In addition to being the host of the Energy...


Alex the Great and LCHAD

ENERGY IN ACTION – EPISODE 066                 Alex is in her second year of college at Texas Tech where she is studying...


Tara Zier – Stiff Person Syndrome Research Foundation and Finding Your Purpose

PARENTS AS RARE – EPISODE 065 Tara Zier – Stiff Person Syndrome Research Foundation and Finding Your Purpose Tara Zier is a rare disease patient, mother and the Founder...


Lovevery – Purposeful Play Customized for all Abilities

ENERGY IN ACTION – EPISODE 064 Maral Amani is a Licensed Physical Therapist and the Disability Support Specialist at  Lovevery, a toy company that helps families, educators and therapists...


Meet Devin the Genetic Counselor and Mito Patient

  ENERGY IN ACTION – EPISODE 063 Devin Shuman is a Genetic Counselor based outside of Seattle, Washington. At age 16, she was diagnosed with Mitochondrial Depletion Syndrome (MDS)....


Parenting with Sarcoidosis & Discussing the Global Genes 2022 Rare Patient Advocacy Summit

PARENTS AS RARE – EPISODE 062 Mary Morlino – Parenting with Sarcoidosis & Discussing the Global Genes 2022 RARE Patient Advocacy Summit Mary Morlino is the Rare Concierge Patient...


Meet the Bartles

ENERGY IN ACTION – EPISODE 060 Meet the Bartles Jake and Cami Bartle have been married for three years and they join us to share their rare disease experience...