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MitoAction Expert Series
MitoAction
100 episodes
9 months ago
Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts
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Science
Health & Fitness
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All content for MitoAction Expert Series is the property of MitoAction and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts
Show more...
Science
Health & Fitness
Episodes (20/100)
MitoAction Expert Series
Aging with Mito
Dr. Mark Tarnopolsky, founder, CEO and CSO of Exerkine Corporation, a biotechnology/nutraceutical company developing therapies for aging, obesity, muscular dystrophy, and mitochondrial disorders, discusses aging as it relates to mito in this Expert Series recording. Original Airdate: June 16, 2023
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2 years ago
1 hour 18 minutes 9 seconds

MitoAction Expert Series
Mitochondria and Psychiatry
This presentation will discuss mitochondria and psychiatry and cover the evidence that for a subset of people with bipolar disorder, mitochondria may be dysregulated in the brain. Medications used for bipolar disorder can change mitochondrial function and several novel strategies can target mitochondria.
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2 years ago
1 hour 7 minutes 22 seconds

MitoAction Expert Series
Wondering Wednesdays: Ask the Genetic Counselor Episode 1
Join us for this monthly expert series where we dive into what a genetic counselor is, what they do, how they can help you in your diagnostic journey, and some mito genetics 101.
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2 years ago
1 hour 12 minutes 6 seconds

MitoAction Expert Series
Mito Town Meeting
The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs and projects for patients and families affected by mitochondrial disease.
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2 years ago
2 hours 14 minutes 49 seconds

MitoAction Expert Series
Grief and Mito
The only thing universal about grief is that it’s universal, something we’ll all experience at some point in our lives. It’s messy, hard, non-linear, and while it may change, grief is never ending. The complexities of being a parent, caregiver, or patient in the mitochondrial disease community adds many layers that impact the grieving process. Join us as chaplain and author Becky Sansbury leads us in a discussion with Jessica Fein and Adam Johnson, about the different kinds of grief we experience throughout the mito journey.
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2 years ago
1 hour 15 minutes 3 seconds

MitoAction Expert Series
Transition Tips for Patients and Parents
Join Dr. Jordan Kemere as she discusses different components of healthcare transition including finding adult physicians, insurance changes, and transitioning to adult life. She will offer practical tips to parents and caregivers to start working on transition even at a young age.
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3 years ago
1 hour 3 minutes 32 seconds

MitoAction Expert Series
Navigating the Financial Minefield of Genetic Testing
There are so many misunderstandings and misconceptions of genetic testing. Dave will attempt to clarify these issues, and provide tools to empower patients to participate in their care from a financial perspective. His objective will be to provide a clear and concise breakdown of appropriate testing for Mito families seeking a diagnosis, while keeping their out of pocket costs as low as possible.
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3 years ago
58 minutes 34 seconds

MitoAction Expert Series
LCHADD Retinopathy
The underlying cause of LCHADD retinopathy is not fully understood. This presentation will look at the research that identifies the cell in the eye that is initially affected and characteristics associated with vision loss. Join Dr. Gillingham as she discusses early data on the natural history study and some new pre-clinical models to test novel treatments for LCHADD retinopathy.
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3 years ago
1 hour 7 minutes 5 seconds

MitoAction Expert Series
Cardiac Complications with LCHADD
Cardiac complications were often identified in symptomatic infants and children before newborn screening. Cardiac dysfunction can re-emerge or present for the first time during metabolic crisis at any age. This presentation with Dr. Melanie Gillingham will discuss the cardiac presentation in adolescent/young adults with LCHADD and discuss current efforts to better understand this late complication of LCHADD.
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3 years ago
1 hour 48 seconds

MitoAction Expert Series
Reneo Pharmaceuticals LC-FAOD REN001 Clinical Trial Update
There was much discussion about current research in FAODs at our recent International Metabolic conference last month. Reneo Pharmaceuticals recently released positive results from the REN001 Phase1b LC-FAOD Study.
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3 years ago
1 hour 2 minutes 7 seconds

MitoAction Expert Series
The Ins and Outs of CHOP Mito Clinic
Mitochondrial Medicine at Children’s Hospital of Philadelphia (CHOP) is emerging as the premiere center in the world for multidisciplinary clinical care, advanced diagnostics and therapies, and individualized basic, translational, and clinical research programs dedicated to improving the health of patients of all ages living with mitochondrial disease. The program is part of the Division of Human Genetics. The Frontier Programs are unique, cutting-edge programs that will forge important new discoveries, deliver novel therapies, and help children and adults thrive. Please join us for an informational session to guide your visit and care through the CHOP Mitochondrial Medicine Program. Dr. Amy Goldstein, the Clinical Director, and Genetic Counselor James Peterson will answer your questions.
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3 years ago
1 hour 1 minute 14 seconds

MitoAction Expert Series
Exercise and Nutritional Issues in Mitochondrial Disease
Join MitoAction and Dr. Mark Tarnopolosky to discuss: What exercises are good for mitochondrial disease and how do we exercise safely? Are there any diets or dietary concerns for patients with mitochondrial disease? What is the current status of the mitochondrial cocktail?
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3 years ago
1 hour 23 minutes 55 seconds

MitoAction Expert Series
Psychiatric Disorders, Meds and Mito
Dr. Marcus Favero speaking on Psychiatric Disorders, Medications & Mitochondrial Disease Depression, schizophrenia, bipolar disease, and other psychiatric diseases - what is the connection for patients with mitochondrial disease?
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3 years ago
1 hour 4 minutes 48 seconds

MitoAction Expert Series
Spectrum Needs, a New Comprehensive Nutritional Therapy for Autism, Functional Conditions and Mitochondrial Disease - 4/6/2018
Talking points include: -What does the medical literature say regarding the uses of nutritional therapies in the autism and related neurodevelopmental disorders? -What about the uses of nutritional therapies in functional disease such as pain, fatigue, GI dysmotility, dysautonomia, anxiety, and depression? -What exactly is Spectrum Needs, and how can it be used as nutritional support for the above conditions? -Spectrum Needs beyond the spectrum: What about the use of this product in the average "mito" patient? -How to integrate SpectrumNeeds into a complicated supplement regiment?   About The Speaker:   Richard G. Boles, MD Dr. Richard G. Boles completed medical school at UCLA, a pediatric residency at Harbor-UCLA, and a genetics fellowship at Yale. For over two decades, Dr. Boles' clinical and research focus has been on changes in genes involved in energy metabolism, and more recently ion channels, and their effects on the development of common functional disorders. Examples include autism, pain syndromes, chronic fatigue, cyclic vomiting, intestinal dysmotility/failure, and depression. Dr. Boles practices the "bedside to bench to bedside" model of a physician-scientist, combining an active clinical practice with basic research into the underlying genetic predispositions leading to the same conditions. He has over 80 published papers, mostly in mitochondrial medicine. For 20 years, Dr. Boles was a faculty member at the Keck School of Medicine at USC and a practicing medical geneticist and metabolic specialist at Children's Hospital Los Angeles. He was a Medical Director of Lineagen and Courtagen, which are/were genetic testing companies. Dr. Boles became involved in genetic testing in order to facilitate the translation of the vast amounts of acquired genetic knowledge into applications that improve routine medical care. Dr. Boles has an active private practice in Pasadena and Aliso Viejo, CA. About half of the patients he currently sees as a physician have one of more functional conditions, especially cyclic vomiting syndrome, other forms of complex migraine, and/or chronic fatigue syndrome. Most of the other half have an autistic spectrum disorder or related condition. His clinical practice is devoted to using information, including genetic testing, to guide options for therapy. His care philosophy, practice, and types of patients he accepts are discussed at http://molecularmitomd.com. A telemedicine practice has just started at https://cnnh.org. Dr. Boles also does legal consulting, especially for those with multiple functional conditions that others are considering fictitious disorder/Munchausen-by-proxy/medical child abuse. Finally, he is the primary designer of SpectrumNeedsTM, a nutritional product with 33 active ingredients designed for individuals with autism or other neurodevelopmental disorders, with an emphasis on assisting mitochondrial function (https://www.neuroneeds.com).
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3 years ago
1 hour 2 minutes 59 seconds

MitoAction Expert Series
What You Should Know About Genetic Testing for Mitochondrial Disorders
Join Amanda Balog, CGC, Senior Genetic Counselor, Mitochondrial and Metabolic Genetics, of GeneDx as she discusses: "What You Should Know About Genetic Testing for Mitochondrial Disorders." Talking points include: Many genetic testing options for Mito patients are available and no one test is right for every individual patient. Sample type matters when testing for mitochondrial disorders. Detailed clinical information and family member testing is important for the interpretation of genetic testing. About The Speaker Amanda Balog is a board-certified genetic counselor and is the lead genetic counselor for the Mitochondrial and Metabolic Testing Programs at GeneDx. Prior to joining GeneDx, Amanda worked for several years as a clinical and research genetic counselor specializing in immune and lysosomal storage disorders.
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3 years ago
1 hour 6 minutes 36 seconds

MitoAction Expert Series
Interpreting Genetic Testing
Join us with Dr. Richard Boles as we learn more about how to interpret genetic test results. The landscape today for a mitochondrial disease diagnosis is rapidly changing and now includes some genetic testing for most patients. However, many families are confused even further by the results. What is an VUS? What do the specific mutations mean? What does 30% depletion mean? Learn the nuts and bolts of interpreting today's genetic tests from Dr. Boles in this informative discussion. About the Speaker Dr. Boles completed medical school at UCLA, a pediatric residency at Harbor-UCLA, and a genetics fellowship at Yale. He is board certified in Pediatrics, Clinical Genetics and Clinical Biochemical Genetics. His current positions include Associate Professor of Pediatrics at the Keck School of Medicine at USC, attending physician in Medical Genetics and General Pediatrics at Childrens Hospital Los Angeles, and Medical Director of Courtagen Life Sciences. Dr. Boles practices the "bedside to bench to bedside" model of a physician-scientist, combining an active clinical practice in metabolic and mitochondrial disorders with clinical diagnostics and basic research through Courtagen. Dr. Boles' clinical and research focus is on polymorphisms (common genetic changes) in the DNA that encodes for mitochondrial genes, and their effects on the development of common functional disorders. Examples include migraine, depression, cyclic vomiting syndrome, complex regional pain syndrome, autism and SIDS.
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3 years ago
1 hour 34 minutes 34 seconds

MitoAction Expert Series
Interview with Andrew Mele
Meet Andrew Mele
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3 years ago
10 minutes 40 seconds

MitoAction Expert Series
Medical Ethics and Patient Rights
Join in to listen to RN, Julie Gortze.
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3 years ago
2 hours 36 minutes 58 seconds

MitoAction Expert Series
2018 Mito Town Meeting
Organizations share what they have planned for the next 12 months. The annual town meeting is our way of kicking off the new year by sharing all that is planned for the next 12 months. We'll hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease. We'll hear from the following organizations, among many others! MitoAction Mitochondrial Medicine Society Foundation for Mitochondrial Medicine BioElectron Stealth BioTherapeutics Oley Foundation GeneDx Miracles for Mito UMDF MitoBridge Ultragenyx Reata Pharmaceuticals VMP Genetics Lineagen Mitochondrial & Molecular Medicine North American Mitochondrial Disease Consortium Australian Mitochondrial Disease Foundation ThriveRx
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3 years ago
1 hour 45 minutes 33 seconds

MitoAction Expert Series
Basics of Estate Planning and Special Needs Trusts
Please join MitoAction as we welcome Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts. Ms. Hines will be speaking on the basics of estate planning and special needs trusts laws in the U.S. Questions to be answered include: What is estate planning? Why should you create a plan for your estate? What does a will do? What is probate, and which assets go through it? What is a trust? What documents are required for incapacity planning? What is a special needs trust, and why would you need one? About the Speaker Ms. Hines has been practicing in the areas of Special Needs, Elder Law and Estate Planning for over fifteen years. She received her JD from Howard University School of Law, her MBA from Suffolk University and her BA from the University of Vermont. Her clients include individuals and families of children with special needs, the elderly and others in the community. Ms. Hines is the mother of two daughters, one of whom passed away from mitochondrial disease in November of 2013.  Her personal experience as the mother of a child with special needs fuels her passion for quality special needs planning and drives her special understanding and dedication to her practice. Prior to practicing law, she founded and directed the nonprofit home care company, Special Families-Special Care, Incorporated which created a new standard for caregiving and a greater pay scale for caregivers. After leading the company to $1.5 million in revenue and 50 employees, she merged it with Shriver Clinical Services Corporation of Natick, Massachusetts and shifted her focus to her law practice. In addition to her membership in the Massachusetts Bar Association, she is a member of the National Academy of Elder Law Attorneys (NAELA), the National Academy of Special Needs Planners (ASNP) and the Massachusetts Association of Women Lawyers (MAWL), serving most recently as President. Recognized as a Distinguished Citizen by ARC Massachusetts and cited for public service by both the Massachusetts State Senate and House of Representatives, Ms. Hines works tirelessly on behalf of people with disabilities. Ms. Hines served as President of the Massachusetts Association of Women Lawyers for 2008-2009 and serves on the Board of Directors for a number of local non-profit organizations.
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3 years ago
1 hour 7 minutes 13 seconds

MitoAction Expert Series
Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts