Audio Podcast: Recent Episodes
MitoAction
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.
MitoQ's mission is to raise awareness of mitochondria and the link between optimal mitochondria function, health, and longevity.
Managing the Day- to-Day of Mitochondrial Disease, a MitoAction presentation for ThriveRx Day-to-Day Management of Mitochondrial Disease from mitoaction
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.
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 rationale for the mitochondrial cocktail.
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 has become available in recent years.Review new approaches to attempt to shorten time to diagnosis and increase precision.
Topics include:The importance of a medical home for a mitochondrial disease patient.Definition of a medical home.How to establish a medical home.Why a medical home is an essential component of good patient advocacy.Tips on maintaining a healthy medical home relationship.Ms. Wees will describe theses issues primarily from a pediatric perspective, but she will give adult examples as well. Ms. Wees is a patient advocate with Empowered Medical Advocacy. She assists parents and caregivers each week in navigating toward improved quality of life for their child and their families.She can be reached through www.EmpoweredAdvocacy.com
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. Documenting the child's needs to care providers as well as knowing your family's rights to extended school year services can make a huge difference in your child's summer experience. Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts, will be speaking on the basics of extended school year planning and will answer any questions patients or caregivers may have about summertime planning.Questions to be answered include:Does my child qualify for extended school year services?How do I obtain extended school year services for my child?How does extended school year planning fit into the IEP process?What do I need to do to make sure my child's needs are met at summer camp?
Dr. Amy Goldstein provides an update on the Mitochondrial Medicine Society.Areas of discussion include: Transplantation in Mito patientsStroke protocol for MELASStandards of care for Mito patientsCenters of Excellence and the need for community involvement/input
As patients or caregivers, it is frightening to think about what would happen if we could not advocate for ourselves. Fortunately, there are legal documents that can be used to communicate our wishes under such circumstances. This type of legal preparation is called incapacity planning and guardianship.
Please join MitoAction this month for a conversation with the public policy team for the National Organization for Rare Disorders (NORD).
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 this month with Dr. Kendall Wallace, Ph.D., DABT, ATS to learn more about mitochondrial disorders which may be acquired by or aggravated by toxins.
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 supplements are most commonly used as mitochondrial disease therapies?Learn why certain supplements and co-factors help children and adults with mitochondrial disease or dysfunctionExplore the biochemistry of various supplements and how they work in the body and in energy metabolismDiscuss compounding and understand how compounding is used in mitochondrial disease therapy
It's that time of year ... summer comes to a close and children everywhere are going back to school! While a relief for some families, going back to school can be stressful for parents of children with mitochondrial disease.
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;
Join Mitoaction as we discuss how to get involved with the Awareness Walk & Events in 2015.
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.
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 patients with mitochondrial disease? Are there guidelines on dosing and use? Is it true that medical cannabis is for pain and seizures only? Is marijuana addictive, even when used for medical purposes? Have there ever been safety studies published about use of marijuana for medical purposes?
Join us with Stealth BioTherapeutics CEO Travis Wilson and others from the Stealth BT team for a live update from Stealth BT, information about Bendavia, and details about StealthBioTherapeutics' 2015 mitochondrial myopathy clinical trial.
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. All are welcome!
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 conditions.
Learn the nuts and bolts of interpreting today's genetic tests from Dr. Boles in this informative discussion. Dr. Boles is the scientific advisor for Courtagen Life Sciences and is also a practicing mitochondrial specialist at Children's Hospital Los Angeles.
It's time to take charge of the many hours that we as patients and families spend in clinics, waiting rooms, hospitals, and healthcare provider offices. How can you get more out of every appointment? More importantly, how can you get what you need from those interactions?
Join MitoAction in discussing how parents can cope with the stress from Mitochondrial disease.
Discuss exercise and physical therapy for children, teens and adults with mitochondrial disease with MitoAction and Kimberly Serra.
Listen to Cristy Balcells and Kirsten Casale discuss Education and School Advocacy Tips.
Join MitoAction and Dr. Richard Boles from Children's Hospital Los Angeles and Courtagen Life Sciences, Inc to discuss the following questions: What is genomic sequencing and how does it change testing for mitochondrial disorders?, Is NextGen testing appropriate for all people with suspected mitochondrial disease?, How can DNA sequencing change information available about family inheritance of mitochondrial diseases?, Do advances in genomic sequencing impact treatment options for Mito patients?
Join MitoAction this month with Dr. Richard Frye, MD PhD, Director of Autism Research and Associate Professor of Pediatrics at Arkansas Children's Hospital
Join us this month as we discuss strategies for advocating for the diagnosis, management and treatment of your mitochondrial disease.
Practical approaches to a Mito diagnosis with Dr. Richard Haas from the UCSD Mitochondrial and Metabolic Disease Center.
Advocating Responsibly and Communicating Effectively with Mannie Taimuty-Loomis, MA, LBS from Jonah & The Whale Foundation
2012 Mito Town Meeting with MitoAction members discussing activities, events and volunteer opportunities for 2012.
Join MitoAction to discuss Immunodeficiency Disorders and Mitochondrial Disease with Dr. Susan Pacheco from Memorial Hermann Texas Medical Center Department of Pediatric Allergy and Immunology
Edison Pharma Question and Answer about EPI-743, emergency drug treatment protocol for mitochondrial disease with Dr. Guy Miller and Dr. Greg Enns
School and IEP advice for kids with Mito-Autism with Kirsten Casale, MitoAction Educational Advocate.
Listen to the discussion with John Moon from NEADS.org about service dogs for children and adults with Mito.
An informal discussion with Cristy Balcells on Mito diagnosis and Autism from our February 2011 Autism-Mito Support Meeting.
Exercise: Research & Realities for Mitochondrial Disease with Margaret O'Riley RN from Vancouver General Hospital
An interview with Al Muto from Pine Pharmacy discussing a new formulation for patients with mitochondrial disease.
For someone who lives with mitochondrial disease, understanding the "big picture" is important.
Listen in as we discuss the use of hyperbaric oxygen therepy for mitochondrail disease patients.
For many years, muscle biopsy has been considered the best way to obtain an accurate diagnosis of mitochondrial disease.
Dr. Katherine Sims from Massachusetts General Hospital shares information important to everyone concerned about their health, and explains why recognizing potentially toxic agents can be especially worrisome and detrimental.
Join us this month to learn more about the challenges facing kids and adults with Mito when it comes to nutrition. What are the goals for Mito patients, and how are they different from nutrition goals for the typical population?
Becoming a great advocate: advice for complex patients and families, with Mark Korson MD and Maggie Orr RN
Dr. Marcus Favero speaking on Psychiatric Disorders, Medications & Mitochondrial Disease
Dr. Anselm is a member of MitoAction's medical advisory committee and practices in Child Neurology at Children's Hospital Boston. Her research is focused on clinical presentation of children with mitochondrial disorders and their response to therapy.
MitoAction welcomes Carole Slipowitz PhD and Maggie Orr RN M.Ed this month to discuss the challenges of dealing with a diagnosis of mitochondrial disease. Any chronic illness can be overwhelming - for a child, a family, or an adult with the condition. However, due to the unpredictability, complexity of symptoms, and uncertain prognosis, a diagnosis of mitochondrial disease is especially stressful...and exhausting.
This topic is dramatically important to the parents of children with complex gastrointestinal presentations of mitochondrial disease. MitoAction addresses this topic today in response to the increasing number of accusations of child abuse and Munchausen by proxy that have been placed upon many parents of children struggling from the devastating symptoms of mitochondrial disease.
MITO Meeting Aug 7, 2009 with Lee Jurman from Personal Disability Consulting on the topic: "To work or not to work: Tough choices for adult Mito patients"
Solace Nutrition and Medical Foods joins MitoAction July 10th for a toll-free teleconference to discuss medical foods, how they interact with electron transport chains and more.
Join us as expert Deb Pfister from NutriThrive discusses g-tubes, j-tubes, TPN and the ins and outs of parenteral and enteral nutrition for adults and children who need alternatives to food for nutrition and hydration.
MitoAction is excited to welcome Dr. James Dykens, Director of Investigative Cellular Toxicity at Pfizer Drug Safety Research & Development and author of the 2008 book "Drug Induced Mitochondrial Dysfunction".
Palliative care and hospice: Focus on quality of life with guest speaker Dr. Patricia O'Malley from Massachusetts General Hospital
MitoAction welcomes Jack Raycroft for a discussion on special needs planning. MitoAction meeting March 6 2009.
Join MitoAction with guest speaker Susan Orloff OTR/L to discuss ideas to help with the energy/sensory connection for children and adults with mitochondrial disease.
Genetic inheritance patterns in mitochondrial disease, guest speaker Dr. Katherine Sims of Massachusetts General Hospital An overview of ways that mitochondrial disorders may be inherited, designed to educate patients, families, and community healthcare providers.
Dr. Alex Flores speaks about gastrointestinal issues for mitochondrial disease patients.
This month MitoAction welcomed Dr. Fran Kendall of Emory University's Department of Human Genetics mitochondrial program to discuss the dosing debate around CoQ10 and creatine.
Exclusive Interview with Dr. Guy Miller, CEO of Edison Pharma. On July 15, 2008 Edison Pharma and partner Penwest Pharmaceuticals announced that A0001, an "improved" variant of Coenzyme Q10 (CoQ10), has entered Phase 1 clinical development with healthy volunteers. Edison predicts trials in patients with inherited mitochondrial disease will begin in 2009.
Mitoaction meeting about disability advocacy with special guiest Valerie Powers Smith, Attorney-at-law
Mitoaction discussion dealing with holiday stress and the importance of watching fluid intake.