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MitoAction Expert SeriesEpisodes
Episodes of MitoAction Expert Series
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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,
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 worki
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 prov
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
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 Gil
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.
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
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
Dr. Marcus Favero speaking on Psychiatric Disorders, Medications & Mitochondrial DiseaseDepression, schizophrenia, bipolar disease, and other psychiatric diseases - what is the connection for patients with mitochondrial disease?
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,
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 optio
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 fa
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 glob
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 an
What is the historical use of marijuana for medical purposes?Are there legalities associated with medical marijuana use?When is medical cannabis a potential therapeutic option for patients with mitochondrial disease?Are there guidelines on
We had a wonderful Awareness Rally on Friday, Sept. 5, featuring people who are doing amazing things to raise awareness about mitochondrial disease.Each speaker brought great ideas to the table and truly demonstrated the diverse ways we can ra
Frustrated with the run-around from health insurance companies? Join us this month as we discuss strategies for advocating for the diagnosis, management, and treatment of your mitochondrial disease:Questions to ask when you receive a health i
Join us with Stealth BioTherapeutics CEO Travis Wilson and others from the Stealth BT team for a live update from Stealth BT (click here to check out their website), information about Bendavia, and details about StealthBioTherapeutics' 2015 mit
Tools for Testing Mitochondrial Disorders: The Latest Advances in Genetics and GenomicsGuest speaker Dr. Richard Boles from Children's Hospital Los Angeles and Courtagen Life Sciences, Inc. to discuss:What is genomic sequencing and how does
Dr. Richard Frye, MD PhD, Director of Autism Research and Associate Professor of Pediatrics at Arkansas Children's Hospital to discuss:Evidence for Mitochondrial Dysfunction in Autism Spectrum DisorderBiomarkers for mitochondrial dysfunct
Dr. Mark Korson from Tufts Floating Hospital for Children gives a "crash course" in interpreting lab values! Most patients with mitochondrial disease have faced a page of test results comprised of letters and numbers that would help them und
How can a service dog help a child or adult patient with mitochondrial disease?Learn more and ask questions, such as:How can service dogs help someone with mitochondrial disease?Do service dogs only help people who are deaf?What do service
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