Energy in Action by MitoAction

Dr. Vockley's Journey in Mitochondrial Disease Care

ENERGY IN ACTION - EPISODE 113 Dr. Vockley's Journey in Mitochondrial Disease Care   Dr. Jerry Vockley works everyday in the development and advancement of mitochondrial disease patient care. He is a Cleveland Family Endowed Chair in Pediatric Research, Professor of Pediatrics and Human Genetics, and Director of the Center for Rare Disease Therapy.    EPISODE HIGHLIGHTS   What inspired your career in genetics and mitochondrial care? I stumbled into genetics as an undergraduate and di...

Cegat Genetic Opportunities

ENERGY IN ACTION - EPISODE 112 CeGaT Genetic Opportunities   Eric Miller and Anil Bhardwaj join me from CeGaT, a biotechnology company and world-leader in genetic analyses for a wide range of medical, research and pharmaceutical applications. They offer a lot of resources and ways to improve patient lives in the mito community and they'll highlight those opportunities for us in this episode.   EPISODE HIGHLIGHTS   What is next generation sequencing? In terms of analyzing DNA, the pro...

Chemistry RX

ENERGY IN ACTION - EPISODE 111 Chemistry Rx Jonathan Mordis, Houry Lepedjian and Jennifer Lundy join me from Chemistry Rx. As experts in the preparation of customized medications for patients with rare disorders, they have expertise in compounding formulations for Mitochondrial Disease and they join me for a discussion about everything compounding. EPISODE HIGHLIGHTS What is a compounding pharmacy? When you utilize a retail pharmacy, you have access to commercially available medications wi...

Mito Artisans

ENERGY IN ACTION - EPISODE 110 MitoArtisian’s   Welcome back to our fellow mito warrior, Christine Knox, who's here to talk about a new program she's implementing for MitoAction.    EPISODE HIGHLIGHTS   Can you tell us about the program you've started and what inspired it? I've noticed a lot of programs offered to the mito community are fundraising efforts geared towards people who are sports minded. That's not in my realm of interest, so I decided to offer something artistic because...

Breathtaking

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 and she's a relentless warrior in the memory of her dynamic daughter who she lost to an ultra rare mitochondrial disease, Myoclonic epil...

At College with Mitochondrial Disease

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 their future.    EPISODE HIGHLIGHTS   What do you wish you had...

Mo's Personal Journey

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? I first noticed that I was struggling to hear about the age of 26, and had the standard hearing test done, which revealed significant hearing loss i...

Angel Flight New England

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? We are a nonprofit organization with a mission of flying people, free of charge, for medical care. We carry out our mission with the help of 450 volunteer...

Medical Marijuana for Mitochindrial Disease

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. Dr. Kendall shares her insight and knowledge on the topic of medical marijuana and how it can be used to aid in medical issues.   EPISODE HIGHLIGHTS What is the history of using medical...

Courageous Parents Network

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 that orients and empowers parents and others caring for children with se...

Marcy Young - Living with CPEO

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 diagnosed with muscular dystrophy, but I felt like more digging needed to be done. When I graduated college, my mom had suffered a lot of physical setbacks, so I met with a neurologis...

Self Care for YOU

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 have resilience. I received help along the way and taught me that help is av...

Advocate for YOU

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 conditions. Because doctors were treating something I didn't have, I now have o...

The Passionate Life of Josie

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 HIGHLIGHTS   Can you share what your diagnostic journey has been like? ...

LHON Collective

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 caused by a mutation in the mitochondrial DNA. Symptoms include sud...

Mito Quilts of Hope

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 with the flu and couldn't recover. I saw my doctor, initial testing didn't ...

Introducing Positively Walking with Mito Podcast

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? I have mitochondrial neuropathy ATP deletion with symptoms such as muscle weakness, neuropathy, ataxia and damaged nerves and muscles. My kind of mitochondrial disease affec...

Champs Foundation

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 HIGHLIGHTS   How do you keep appointments and records organized and what...

Employed with Mito Disease

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 and I was diagnosed at a young age with fatty oxidation disorder. As a teen ...

Mito Awareness Week and Parent Stories from the FAOD Community - Live from the IMC

Barth Syndrome - When the Lack of Fair, Equitable and Appropriate Regulatory Review Process Jeopardizes Ultra-Rare Drug Development

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 foundation’s treatment efforts and the families affected by Barth Syndrome. Listeners can help pave the way for future rare and ultra-rare drug de...

Navigating School for Our Kiddos

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 newborn screening for having long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD...

Patient Stories from the FAOD Community - Live from the IMC

  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 Richtman This is my first time attending this conference and I have felt ...

Hailee The Mito Warrior

ENERGY IN ACTION - EPISODE 091 Hailee The Mito Warrior   Hailee is the Ultimate Mito Warrior. She has such a positive attitude, despite the challenges she experiences on a daily basis. She works to create awareness of her mitochondrial disease, and secondary conditions she endures through her videos on YouTube.   EPISODE HIGHLIGHTS   Can you share about your particular mitochondrial disease and your diagnosis journey? I have a disease that's only known to affect me and my mom. I was ...

Jeremiah Gracen TK2D Warrior

ENERGY IN ACTION - EPISODE 090 Jeremiah Gracen TK2D Warrior   Aneesa is the mom to Jeremiah, a beautiful, wonderful and special boy within our mitochondrial community. Aneesa shares her and Jeremiah's story to inspire others in the community.   EPISODE HIGHLIGHTS   Can you share about Jeremiah's disease and diagnosis journey? Jeremiah has thymidine kinase 2 deficiency (TK2D), categorized under the mitochondrial DNA depletion or deletion syndrome, further classified as a myopathic for...

Akron Children’s Hospital Mito Clinic Research Update

ENERGY IN ACTION - EPISODE 090 Akron Children’s Hospital Mito Clinic Research Update   I'm joined by Dr. Bruce Cohen, Dr. Matthew Ginsberg and Clinical Research Coordinator, Ashley Erdesky— all part of the clinical and research team at the Akron Children's Hospital Mitochondrial Center.    EPISODE HIGHLIGHTS   How does a patient discover if they qualify to participate in a clinical trial and how do they get started? A patient can visit clinicaltrials.gov, enter their diagnosis and se...

Grandparents As Rare - Go Find Your Bike

  PARENTS AS RARE - EPISODE 089 Grandparents As Rare: Find Your Bike, With Karen Richtman   Karen Richtman shares her patient story, shining light on her journey and her connection to Fatty Acid Oxidation Disorder (FAOD). In addition to being a parent as rare, she is also a grandparent as rare, and she has some wonderful aspirations for future support and advocacy.    Life is like riding a bike. Balance yourself, hydrate frequently and be safe. It isn't how far or how fast you go that ...

Exercise for Mitochondrial Patients

ENERGY IN ACTION - EPISODE 088 Exercise for Mitochondrial Patients   Dr. Nicole Voet joins us from the Rehabilitation Department of Radboud University Medical Center in the Netherlands. We will discuss the importance of exercise for mitochondrial patients and what is best for our community based on her knowledge, experience and research.    EPISODE HIGHLIGHTS   What is your advice for someone with mitochondrial disease when starting a new exercise routine? When you start exercising, ...

Shades of Grief with Dr. Kendall

ENERGY IN ACTION - EPISODE 087 Shades of Grief with Dr. Kendall   Dr. Fran Kendall is the Founder of VMP Genetics. As a geneticist, she has supported mitochondrial patients for the last three decades. She has also written a book called Shades of Grief which highlights her personal struggles with grief through her professional work as a geneticist.   EPISODE HIGHLIGHTS   What was the inspiration for your book, Shades of Grief? I have always been interested in writing and I've been wri...

Travel Tips from the PAR Community with Lisa Weinberger

  PARENTS AS RARE - EPISODE 086 Travel Tips from the PAR Community with Lisa Weinberger   Lisa Weinberger and host, Adam Johnson, share tips and tricks for summer travel, hitting the road, or taking to the skies when you have unique health situations and circumstances to consider.   EPISODE HIGHLIGHTS   Preparation Plan an itinerary for each day that includes all travel details for easy reference, preferably in a way that can be shared among other traveling family or friends.  Give...

Fighting Chronic Pain with the Neubie

ENERGY IN ACTION - EPISODE 085 Fighting Chronic Pain with the Neubie   Garrett Salpeter is the Founder of NeuFit, which developed the product Neubie, a fantastic advancement in fighting chronic health.   EPISODE HIGHLIGHTS   What is the Neubie? Neubie is an acronym for neuro-bio-electric stimulator. It's a direct current stimulation device that's different from any other electric modality device on the market. Direct current benefits include an electric field gradient which causes ce...

Minds in Motion

ENERGY IN ACTION - EPISODE 084 Minds in Motion   Candace Meyer is the Founder and CEO of Minds in Motion. She's done wonderful work supporting vestibular health throughout the mitochondrial community and beyond. Minds-In-Motion’s revolutionary program, using movement and brain integration, jump-starts the brain's neural pathways to help children maximize potential by building a better foundation for learning and equips them with the tools for success in school, in sports, and in society. ...

Akron Children’s Hospital - Meet the Mito Clinic Team

ENERGY IN ACTION - EPISODE 081 Akron Children’s Hospital - Meet the Mito Clinic Team   We are joined by Dr. Iam Rossman, Dr. Stephen Steiner, Dr. Abdu Alali and Nurse Coordinator, Kim Jaaeger— all clinic members from the Akron Children's Hospital Mitochondrial Center.    EPISODE HIGHLIGHTS   What is the process for a patient to make an appointment? We accept physician referrals and self-referrals and we see patients locally and regionally. Once a patient is accepted into the program,...

A Painful Identity

PARENTS AS RARE - EPISODE 083 A Painful Identity - Renuka Dhinakaran   Renuka Dhinakaran is an international labor lawyer, mom, chronic illness patient and an incredible patient advocate.  EPISODE HIGHLIGHTS   Will you start with sharing about yourself? I'm 38 years old, married and living in the Netherlands, originally from India. I have a son who is 10 years old and I'm an international lawyer with my own law practice. I had a wonderful life until 4 years ago when chronic illness be...

Jireh Somera - Fabry Fighter

PARENTS AS RARE - EPISODE 080 Jireh Somera - Fabry Fighter   Jireh Somera is a husband, father and Fabry fighter. While our rare disease journeys have been different, we share a lot of similarities and it's nice to have someone to relate to. In this episode, Jireh shares some of his journey with us, giving us insight into staying present, shifting perspective and trusting the road ahead, knowing that it's not what he can't do, but what he can do.    EPISODE HIGHLIGHTS   What was life ...

Monica and John Cline - Forever Gift of Compassion - Live Like JoJo

ENERGY IN ACTION - EPISODE 078 Monica and John Cline - Forever Gift of Compassion - Live Like JoJo   Monica and John Cline are the parents to JoJo, who was born with mitochondrial deletion syndrome. His parents continue his legacy through the Live Like Jojo Foundation. Their vision is that every child, regardless of their healthcare challenges, are given the opportunity to experience a joy-filled life and meaningful experiences with their families.   EPISODE HIGHLIGHTS   Can you tell ...

Rare Revolution

PARENTS AS RARE - EPISODE 077 A Rare Revolution - HITMC Meets Rare Disease with Grace Vinton, Kristy Dickinson, & Effie Parks   Grace Vinton, Kristy Dickinson and Effie Parks join me to continue our conversations from the Healthcare and IT Marketing Conference in February. Enjoy this special cross-collaboration of HIT Like a Girl, Parents As Rare, Once Upon a Gene, and Simply Unbreakable. Be sure to check out these podcasts and I'd like to also encourage you to take one actionable step th...

Dr. Neena Nizar - Share Your #RareDiseaseTruth & Give Love A Chance

PARENTS AS RARE - EPISODE 076 Dr. Neena Nizar - Share Your #RareDiseaseTruth & Give Love A Chance Dr. Neena Nizar started the #rarediseasetruth movement. She was misdiagnosed for decades, but now knows she shares a diagnosis with her two sons. Neena is a wonderful person, incredible advocate and the founder of The Jansen's Foundation. EPISODE HIGHLIGHTS Can you tell us about yourself and your connection to the rare disease community? I have a rare disease called Jansen Metaphyseal Chondrodys...

Dalia’s Wish Makes Dreams Come True for the Del Forno Family

ENERGY IN ACTION - EPISODE 075 Dalia’s Wish Makes Dreams Come True for the Del Forno Family   Nicole Del Forno is the mom of Gloria. Her family recently went on a wish trip at Give Kids the World Village and she joins us to share their experience.   EPISODE HIGHLIGHTS   Can you tell us about your family and rare disease journey? My daughter Gloria was born in 2018. At about 6 months old, we noticed she was reaching most milestones, but not babbling like a typical baby her age. At 9 m...

Exploring Palliative Care

  PARENTS AS RARE - EPISODE 074 Exploring Palliative Care   Kimberly Matias, a social worker, and Michelle Hurty, a physician assistant, join me for an exploratory conversation about palliative care to dispel the myths that exist and provide information to my listeners.    EPISODE HIGHLIGHTS   What is palliative care? Palliative care is a multi-disciplinary service that gets involved with patients and their families after the diagnosis of a serious or life-limiting illness. We work ...

Challenging the Status Quo - Robin Powers

  PARENTS AS RARE - EPISODE 073 Challenging The Status Quo - Robin Powers    Robin Powers is a mother who has a rare disease and she's raising a son who has a rare disease. She's a single parent going to school, yet she still manages to knock out important advocacy-related work and projects, all while supporting others. We discuss navigating parenting as parents with rare diseases.   EPISODE HIGHLIGHTS   Can you share what your connection to Ehlers-Danlos syndrome (EDS) is? As a tee...

The Navigation Project

ENERGY IN ACTION - EPISODE 072 The Navigation Project   Lauren Kopsick and Ivy Braun are the founders of the Healthcare Navigation Project, formerly known as Parent It Forward. This is the first independent public healthcare literacy and life care project for all youth as they transition to adult care. They share their advice for transitional planning after pediatric care.    EPISODE HIGHLIGHTS   Can you share what The Healthcare Navigation Project does? We consist of five modules wh...

Good Grief and the Holidays

ENERGY IN ACTION - EPISODE 071 Good Grief and the Holidays   Lisa Athan is the Founder and Executive Director of Griefspeaks. She shares tips and strategies for navigating grief through the holidays and beyond.   EPISODE HIGHLIGHTS   What tools can help someone to get through holidays without someone they've lost? Have an exit strategy at gatherings and know it's okay to decline invitations to holiday events. Ensure you have options for yourself and give yourself permission to exerci...

Meeting My MELAS Mito Friend - Elizabeth Wood

  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 was the first person from the mito and rare disease communities that I was fortunate enough to meet in person. I was grateful to meet with her, discussing being rare disease parents and mitochondrial disease. I learned a lot from our conversation and reuniting to record this podcast was just as helpful.   EPISODE HIGH...

Episode 069 - Give Kids the World with Justin Kiser

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 form of mitochondrial disease. The Kiser family was a recipient of a Mito Action and Give Kids the World wish trip. Justin shares details about their trip and what it meant to their family.    EPISODE HIGHLIGHTS   Can you tell us about yourself and your family? I'm a husband and father of four. We came into the mito family through my youngest dau...

Special Episode - 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.   Tim McLerran is the Co-Founder and Head of Product at Medical Intelligence One, where the mission is to care for patients based on their own deeply informative data with wisdom derived from a partnership between human and machine intelligence trained on data from billions of other humans and all of the world's ...

What Is It Like Being a Research Patient with UDN - Ted Will Tell You

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 in Action Podcast, Stephanie is a mom to three children. Stephanie's son Ted is the youngest of three siblings with two older sisters. Ted and Stephanie recount the mitochondrial disease journey from their shared mother-and-son perspectives.   EPISODE HIGHLIGHTS   What compels me to host this podcast is my need to find my tribe. As an early ...

Alex the Great and LCHAD

ENERGY IN ACTION - EPISODE 066 Alex the Great and LCHAD   Alex is in her second year of college at Texas Tech where she is studying human development and family sciences. She also has LCHAD, a long-chain fatty acid oxidation disorder.    EPISODE HIGHLIGHTS   Can you introduce yourself and share more about LCHAD? I'm 20 years old and a sophomore at Texas Tech University. LCHAD is a rare genetic metabolic disorder that prevents me from using fat for energy. I eat a low fat diet because...

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 and President of The Stiff Person Syndrome Research Foundation, where the vision is that all people with Stiff Person Syndrome (SPS) receive a prompt diagnosis, compassionate care, effective treatments and a cure. The mission is to raise awareness of SPS, to support research for better treatments and a cure for SPS wh...

Lovevery - Purposeful Play Customized for all Abilities

ENERGY IN ACTION - EPISODE 064 Lovevery - Purposeful Play Customized for all Abilities   Maral Amani is a Licensed Physical Therapist and the Disability Support Specialist at  Lovevery, a toy company that helps families, educators and therapists find the right toys and the right tools to help develop confidence through play.   EPISODE HIGHLIGHTS   Can you tell us about yourself and your work? I'm a Physical Therapist, specializing in children ages 0-3 and early intervention. At Lovev...