Energy in Action by MitoAction

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 fo...

  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,...

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 o...

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 f...

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...

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 w...

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 t...

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...

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 s...

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...

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 notice...

  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...

  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 HIGHL...

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  ...

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 ho...

  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...

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...

  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 an...

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 HI...

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 met...

  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 i...

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...

ENERGY IN ACTION - EPISODE 063 Meet Devin the Genetic Counselor and Mito Patient   Devin Shuman is a Genetic Counselor based outside of Seattle, Washington. At age 16, she was diagnosed with Mitochondrial Depletion Syndrome (MDS).   EPISODE HIGHLIGHTS   How are you connected to the mito community? I was diagnosed with Mitochondrial Depletion Syndrome (MDS) at age 16. My brother went through the di...

  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 Services Manager at Global Genes. Mary and I will be speaking on a Parenting While Rare panel at the upcoming 2022 RARE Patient Advocacy Summit. The summit is one of the world’s largest gatherings of rare disease...

ENERGY IN ACTION - EPISODE 061 Jacob Shinder and CPEO+   Jacob Shinder is a 22 year old college student who was diagnosed with CPEO+ at the age of 12. He joins us to talk about his experience and how it has shaped his goals for the future.    EPISODE HIGHLIGHTS   What is CPEO? Chronic progressive external ophthalmoplegia (CPEO) is a drooping of the eyelids. I have CPEO+ which also causes overall b...