Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts
2021 Town Hall Meeting - 1/15/21
The annual town hall meeting is MitoAction’s 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.
Mito Basics: Genetics, Testing and Financial - David Keane - 12/4/20
Join MitoAction and David Keane from GeneDX for our December Monthly Mito Expert Series presentation titled: Mito Genetic Basics: Disease, Testing and Financial.
About the Speaker:
David Keane has been involved with Neurogenetics since 1998 when he started working for Athena Diagnostics. He has attended over 50 Mitochondrial Disease Grand Rounds Presentations by Dr. Bruce Cohen, Sumit Parikh, Fran Kendall, Amy Goldstein, among others. David was hired by GeneDx in 2011 to help build the Neurogenetics team and currently serves as a Senior Genetic Testing Consultant specializing in Neurology and Mitochondrial Genetics.
Accompanying slides can be found by clicking here.
Mitochondrial Myopathy - Dr. Bruce Cohen - 11/20/2015
What is Mitochondrial Myopathy?
The word “myopathy” means disease of the muscle tissue. As the term implies, mitochondrial myopathy (MM) is a neuromuscular disease caused by damage to the mitochondria. Many patients with mitochondrial disease have a mitochondrial myopathy, either as their sole diagnosis or as an additional, descriptive co-diagnosis as part of their mitochondrial disorder. Mitochondrial myopathy may be present in adults and children, and may occur with or without a genetic mitochondrial disease diagnosis. Further, several clinical trials are currently examining the impact of various therapies or potential treatments for people with mitochondrial myopathy.
Join us this month on Friday, November 20th at 12 pm EST with Dr. Bruce Cohen, Director of Pediatric Neurology and then the Director of the NeuroDevelopmental Science Center at Akron Children’s Hospital. Dr. Cohen is well-known and highly respected as an expert author, speaker, clinician and research investigator in mitochondrial disorders. Topics for this important discussion include:
What is mitochondrial myopathy?
How is it diagnosed?
Are there treatments for mitochondrial myopathy? Other management strategies?
What are the most common symptoms of mitochondrial myopathy?
Who typically is diagnosed with mitochondrial myopathy?
About The Speaker
Dr. Bruce H. Cohen attended college at Washington University in St. Louis and a BA in chemistry, graduating summa cum laude in 1978. He received his medical degree from the Albert Einstein College of Medicine in Bronx, N.Y. in 1982 and went on to his pediatric residency at the Children’s Hospital of Philadelphia, followed by a residency in neurology at Columbia Presbyterian Medical Center in New York. He then obtained a two-year American Cancer Society fellowship in neuro-oncology at the Children’s Hospital of Philadelphia. In 1989 Dr. Cohen joined the Cleveland Clinic’s department of Neurology, and served as chief of Pediatric Neurology from 1999-2002, with joint appointments in the Clinic’s Taussig Cancer Center, the Eepartment of Neurosurgery and the department of Pediatrics. In 2011, he joined Akron Children’s Hospital in Akron, Ohio, as Director of Pediatric Neurology and then the Director of the NeuroDevelopmental Science Center. He serves in many leadership roles within Akron Children’s Hospital.
His specialty interests include adult and pediatric neuro-oncology, mitochondrial medicine, neurofibromatosis, neurometabolic diseases and pediatric neurology. He has served on a number of committees for the Children’s Oncology Group, the American Academy of Neurology (AAN), the Child Neurology Society. He currently serves as chairman of the Coding Subcommittee within the Medical Economics and Management Committee of the AAN, and Secretary-Treasurer of the CNS. His past leadership positions include Chairman of the Pediatric Section of the AAN, Chairman of the Practice Com
Diet, Dysmotility, and Tube Feeding - Kristen R. Roberts - 12/4/2015
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. On December 4th, 2015, Thrive RX Clinical Specialist Kristen R. Roberts PhD RD shares about diet, dysmotility and tube feeding.
Topics for this presentation include:
What are the benefits of nutrition support for someone with dysmotility?
What type of assessment is needed in order to determine if a feeding tube (and enteral nutrition, or tube feeding) is right for me/my child?
What strategies can help improve overall tolerance to diet and enteral nutrition in a person with mitochondrial disease and dysmotility?
What are some examples of specific situations when enteral nutrition should be considered?
This presentation is appropriate for adult patients, parents of affected children, caregivers, family members and healthcare providers.
About the Speaker
Kristen Roberts is an Assistant Professor of Clinical Medicine at The Ohio State University Wexner Medical Center and a Registered Dietitian specializing in gastrointestinal nutrition, intestinal failure and home nutrition support. She received her bachelor’s degree in Dietetics at Bowling Green State University and her Master’s degree and internship in Human Nutrition at Arizona State University. She completed her PhD in Human Nutrition at The Ohio State University where she studied the impact of dietary interventions for disease prevention. Kristen has spent most of her clinical years working with intestinal failure patients and specializing in intestinal rehabilitation and home parenteral nutrition. She is an active member in The Ohio Society for Parenteral and Enteral Nutrition and is the coauthor of the iThrive program, which is a nutritional guide for consumers with intestinal dysmotility. Kristen has spoken nationally on the management of acid/base imbalances in clinical practice, improving nutrition support education for physicians and the management of intestinal failure patients. In addition to these presentations, she has published several articles and book chapters dedicated to the clinical management of intestinal failure.
To view the accompanying slides, click here.
2016 Mito Town Meeting - 1/8/2016
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, camps, and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease.
The following will participate in the meeting!
Courtagen Life Sciences, Inc.
Mitochondrial Research Guild
Mito Hope & Help
Genetic Metabolic Institute
Massachusetts General Hospital
Miracles for Mito
Double H Ranch camp
Foundation for Mitochondrial Medicine
Victory Junction camp
AMDF (Australian Mitochondrial Disease Foundation)
Mitochondrial Medicine Society
Fatty Acid Oxidation Disorders - Dr. Jerry Vockley - 2/5/2016
What are fatty acid oxidation disorders, and why are they related to mitochondrial disorders?
Additional 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?
Special appreciation to Ultragenyx Pharmaceutical for support of this presentation.
About the Speaker
Dr. Jerry Vockley, University of Pittsburgh Cleveland Family Professor of Pediatric Research and Professor of Human Genetics at the Children’s Hospital of Pittsburgh of UPMC. Dr. Vockley is the Chief of Medical Genetics and Director of the Center for Rare Disease Therapy.
To view the accompanying slides, click here.
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This is a great resource for patients and families living with mitochondrial disease.
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I have had a Mitochondrial Disorder for over 10 years now. I am 53 years old. Listening to some of these podcasts have helped me understand how to put into words how I have felt all these years.
Just figuring out this has been underlying undiagnosed problem my whole life. Great help in leading me to find the docs I need to deal with this. Very grateful for your work.