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 – EPISODE 048 Parenting & Living Life With Chronic Pain – Ross McCreery Ross McCreery is a dad, husband, advocate, writer and speaker. In 2006, Ross...
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 – EPISODE 046 Family Coping, Communication, & Mental Health Resources – Dr. Jennifer Young, Postdoctoral Scholar, Biomedical Ethics – Stanford University Dr. Jennifer Young is a...
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....
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 – EPISODE 043 Cowden Syndrome & Male Mental Health – David Ross David Ross is a rare disease leader in men’s mental health. He plans and...
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...
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...
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...