Energy in Action by MitoAction
Energy In Action by MitoAction will consist of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts will give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research and the advancement of therapies. If you would like to be a guest or suggest a topic, please email us at info@mitoaction.org.
Episodes
ENERGY IN ACTION - EPISODE 109
Breath Taking
Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes. She's also an essayist, and advocate, a speaker and the host of the I Don't Know How You Do It podcast, which features guests who triumph over seemingly impossible challenges. Jessica is a working mom of three children an...
ENERGY IN ACTION - EPISODE 108
At College with Mitochondrial Disease
College can be a challenging and overwhelming experience for any student, but the complexities of mito disease makes college even more challenging. Natalie, Alex and Annie are all college students and they join me, along with the Mito Action CEO, Kira Mann, to talk about their experience and how Mito Action can be helpful to students who have college in the...
ENERGY IN ACTION - EPISODE 107
Mo's Personal Journey
Mo has Maternally Inherited Diabetes and Deafness (MIDD), caused by a mutation in his mitochondrial DNA. Mo is married, in his 30's with two children and he joins me to tell his story and to share his diagnostic journey.
EPISODE HIGHLIGHTS
Where did your diagnostic journey begin?
ENERGY IN ACTION - EPISODE 106
Angel Flight New England
Kirk Walters and Larry Camerlin of Angel Flight New England are here to share about the organization, how they can assist patients who need to travel for medical care and the other resources they assist with.
EPISODE HIGHLIGHTS
What is Angel Flight New England's mission?
ENERGY IN ACTION - EPISODE 105
Medical Marijuana for Mitochondrial Disease
Dr. Fran Kendall is a Clinical Biochemical Geneticist and Founder of VMP Genetics. She is also an Adjunct Assistant Professor at the University of Georgia and authored the book Shades of Grief: Echoes of Hope from the Darkness
ENERGY IN ACTION - EPISODE 104
Courageous Parents Network
Blyth Lord and Liz Morris join me from the Courageous Parents Network, an organization that offers a lot of resources for parents and caretakers, from diagnosis to losing a child and every stage in between— it's like a warm hug!
EPISODE HIGHLIGHTS
What is Courageous Parents Network (CPN)?
Courageous Parents Network is a national non-profit organization th...
ENERGY IN ACTION - EPISODE 078
Marcy Young - Living with CPEO
Marcie Young is a young adult who is impacted by CPEO and lives near Cleveland, Ohio.
EPISODE HIGHLIGHTS
Can you share about your diagnosis journey?
My whole life, my mom seemed off and it continued to get worse as I got older. She was ...
ENERGY IN ACTION - EPISODE 103
Self Care for YOU
Author of After the Shock and International Resilience and Crisis Recovery Speaker, Becky Sansbury, has provided so much support for the rare disease community. She joins the podcast to share her best self-care advice with our listeners.
EPISODE HIGHLIGHTS
What inspired the work you do?
Decades ago I was affected by a family crisis and realized I didn't hav...
ENERGY IN ACTION - EPISODE 102
Advocate for YOU
Jen Owen is a mito patient and mito mom, joining me to share her personal journey having mito, about her diagnosis journey, her family and how to best advocate for yourself when you're affected by health issues.
EPISODE HIGHLIGHTS
Can you share about your mitochondrial disease journey?
I experienced 15 years or more of misdiagnosis of more familiar co...
ENERGY IN ACTION - EPISODE 101
The Passionate Life of Josie
Josie van Londen suffers from two interlinked mitochondrial conditions she was diagnosed with as an adult, at the height of her career as an oncologist. Despite her diagnosis and the changes she had to make in her life and career, Josie continues to create meaning in her life in the way she knows best— helping those living and beating cancer.
EPISODE HI...
ENERGY IN ACTION - EPISODE 100
LHON Collective
Lissa Poincenoit and Malinda Marsh are the co-founders of the LHON Collective, created to make the diagnostic and treatment process easier for patients and connect them with supportive communities. They are also both mothers to children living with Leber Hereditary Optic Neuropathy (LHON).
EPISODE HIGHLIGHTS
What is LHON?
Leber Hereditary Optic Neuropathy (LHON) is...
ENERGY IN ACTION - EPISODE 099
Mito Quilts of Hope
Christine Knox is a mito patient and the founder of the Mito Quilts of Hope project.
EPISODE HIGHLIGHTS
How were you introduced to the mito community?
My parents noticed when I was young that I would fall asleep anywhere, I didn't gain weight easily and I didn't have the same level of energy as other kids. It wasn't until I was an adult that I got sick wi...
ENERGY IN ACTION - EPISODE 098
Introducing Positively Walking with Mito Podcast
Jenevieve Woods and Alexandra Salser join me to share their stories and share about a special positivity project they're doing for the benefit of the mito community.
EPISODE HIGHLIGHTS
Jenevieve, can you tell us about yourself?
Read more
ENERGY IN ACTION - EPISODE 097
Champs Foundation
Elizabeth Reynolds is a mom of three children and her oldest, William, has Pearson syndrome, a multi-system disease caused by a deletion in mitochondrial DNA. She is also the Founder of The Champ Foundation, which supports research toward better treatment and a cure for single large-scale mitochondrial deletion syndromes (SLSMDS), like Pearson syndrome.
EPISODE HIGHLIGH...
ENERGY IN ACTION - EPISODE 096
Employed with Mito Disease
Bill, Tasia and Nina are all mito warriors navigating employment despite the challenges of the disease. We're having a discussion of how they adjust their work lives to ensure they're not pushing themselves beyond their limits and also caring for themselves.
EPISODE HIGHLIGHTS
Tasia, can you tell us about yourself and the work you do?
I'm 31...
ENERGY IN ACTION - EPISODE 094
Barth Syndrome - When the Lack of Fair, Equitable and Appropriate Regulatory Review Process Jeopardizes Ultra-Rare Drug Development
Barth Syndrome Foundation Executive Director Emily Milligan, and Director of Family Services & Advocacy, Shelley Bowen join me for a discussion about the latest news surrounding the foundati...
ENERGY IN ACTION - EPISODE 093
Navigating School for Our Kiddos
Beth Folcher is a parent and teacher. She joins us to kick off the school year with tips for parents of children with mitochondrial conditions so that we can be the best-informed advocates for our children.
EPISODE HIGHLIGHTS
Can you tell us about your son and your experience with rare disease?
My son was born in 2005 and was flagged at newbo...
PARENTS AS RARE - EPISODE 092
Patient Stories from the FAOD Community - Live from the IMC
I encouraged the FAOD community attending the 2023 Metobolic Conference in Denver, CO to share their stories with me. This is a special, live-recorded episode that features patient stories that paint a beautiful picture of what their journeys have been like and the importance of community.
EPISODE HIGHLIGHTS
Karen R...
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