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Resource Type: Podcasts


Living Rare – An Adult’s Perspective

ENERGY IN ACTION – EPISODE 049 Living Rare – An Adult’s Perspective Fred Jacobowitz has been diagnosed with Carnitine Palmitoyltransferase Type II (CPT-II/CPT2) Deficiency, a type of fatty acid...


Parents as Rare: Parenting & Living Life With Chronic Pain

PARENTS AS RARE – EPISODE 048 Parenting & Living Life With Chronic Pain – Ross McCreery  Ross McCreery is a dad, husband, advocate, writer and speaker. In 2006, Ross...


The Strength of a Mom

ENERGY IN ACTION – EPISODE 047 The Strength of a Mom Tonie DeLorenze is impacted by mitochondrial disease herself and also has three children with mitochondrial disease.    ...


Parents as Rare – Family Coping, Communication, & Mental Health Resources – Dr. Jennifer Young, Postdoctoral Scholar, Biomedical Ethics – Stanford University

PARENTS AS RARE – EPISODE 046 Family Coping, Communication, & Mental Health Resources – Dr. Jennifer Young, Postdoctoral Scholar, Biomedical Ethics – Stanford University Dr. Jennifer Young is a...


Live Life, Dream Big, Be Positive

ENERGY IN ACTION – EPISODE 045 Live Life, Dream Big, Be Positive Stacy and Ari Goldberg share the story of their Mito Warrior. Rina lived an authentic be-positive life....


Removing Barriers in Ultra-Rare

ENERGY IN ACTION – EPISODE 044 Removing Barriers in Ultra-Rare Joining me in this episode are Desiree Magee & Ashley Rowland of CureARS, a non-profit organization dedicated to spreading...


Parents as Rare: Cowden Syndrome and Male Mental Health – David Ross

PARENTS AS RARE – EPISODE 043 Cowden Syndrome & Male Mental Health – David Ross David Ross is a rare disease leader in men’s mental health. He plans and...


Empowering Parents Nationwide

ENERGY IN ACTION – EPISODE 042 Empowering Parents Nationwide Marsha Quinn is the parent of two children who have Autism. As the Co Executive Director for Parent to Parent...


Everylife Foundation Newborn Screening

ENERGY IN ACTION – EPISODE 041 EveryLife Foundation Newborn Screening The EveryLife Foundation is dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and...


Silver Linings with Sarah Kate

ENERGY IN ACTION – EPISODE 040 Silver Linings with Sarah Kate Sarah Kate Frey is a mitochondrial disease patient who is always looking on the bright side, seeking silver...