Mitochondrial Disease Action Committee public
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The official MitoAction podcast is a monthly call often with physicians who are experts on mitochondrial disease. Mitochondrial disease occurs when the mitochondria(the powerhouse of a cell) are unable to effectively generate energy during food metabolism. Approximately one in 4000 adults and children have mitochondrial disease ("Mito"). MitoAction is a non-profit organization dedicated to support, education and advocacy for the mitochondrial disease patient community.
 
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show series
 
Dr. Fran Kendall of VMP Genetics discusses "Is it really Mito? When an alternative diagnosis should be considered."Talking points include:Clinical red flags that suggest an alternative diagnosis should be considered;Why that option should be entertained;Tools utilized to reanalyze patients classified with mitochondrial disease.…
 
Dr. Tarnopolsky, Professor of Pediatrics and Medicine, President and CEO, Exerkine Corporation, and Director of Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center, will discuss the theory and practical issues with endurance and resistance exercise therapy; general nutritional guidelines for mitochondrial disease and the r…
 
Dr. Adams, Medical Director of the Goryeb Children’s Hospital Genetics and Metabolism Division in addition to the Personalized Genomic Medicine Program at Atlantic Health System in Morristown, NJ, will: Explore gene testing and discuss the rationale for using it as first-line testing.Review traditional diagnostic pathways.Discuss newer testing that…
 
Summertime is a time of changed routines for many Mito families. Camp programs, such as those supported by the Matthew Harty Camper Fund, provide special opportunities for children with mitochondrial disease. Mitochondrial disease patients often qualify for and benefit from extended school year services through local school systems as well. Documen…
 
Areas of discussion include: * Do patients with mitochondrial defects also have the potential to have fatty acid oxidation defects? * How do disorders of metabolism such as FAOD and mitochondrial disease impact the body's ability to grow, develop and function? * What is the current focus in research for understanding and treating FAODs?…
 
Many children and adults with mitochondrial disease experience significant gastrointestinal or digestive issues as part of their daily disease challenges. When considering the pros and cons of a feeding tube and struggling to identify the best diet for dysmotility, many parents, patients and families are confused by all of the possibilities.…
 
Mitochondrial dysfunction has been identified as an important factor in many diseases and conditions beyond primary mitochondrial disease, including autism, ALS, Parkinson's, Alzheimer's, and diabetes. Exposure to toxins via medication, lifestyle, and the environment may lead to mitochondrial dysfunction, cell damage and organ dysfunction. Join us …
 
What is "the Mito Cocktail"?Referring to the combination of vitamins and supplements used as therapies in the treatment and management of mitochondrial disease and mitochondrial dysfunction, the "Mito Cocktail" is unique to every patient. Join us with compounding pharmacist Ted Toufas PharmD RPh from Acton Pharmacy to learn more.Understand what sup…
 
Overview of SSI and SSDI programs;The differences between SSI and SSDI;Social Security’s definition of disability as it pertains to mitochondrial disease;How SSDI is designed to work, eligibility criteria, and the full range of SSDI benefitts;The application and appeals processes for SSI and SSDI;
 
Dr. Fran Kendall gives the answers to these questions and more regarding the use of medical marijuana (cannabis oil) for treatment in mitochondrial disease patients.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 pat…
 
Mitochondrial disorders are characterized by complex presentation of multiple symptoms. Due to a variety of factors, including heterogenity of the disease, erratic symptom presentation and general lack of awareness about the condition, families with mitochondrial disease are more often faced with accusations of medical child abuse than other condit…
 
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