Audio Podcast

Frye - Primary Mitochondrial Disease

Dr. Kendall - DTC Testing

2019 Mito Cocktail

Pioneers & Partners

2019 Mito Town Hall

Dr. Peter McGuire - Mito & Immune Systems

Dr. Amel Karaa - MMS Standards of Care

Dr. Doug Wallace discusses Mitochondrial Genetics and Disease

Dr. Boles - The Spectrum of Medical Child Abuse and What is Happening Across the Country?

Dr. Boles Spectrum Needs

Dr. Koenig - The Evolution of Leigh Syndrome

Dr. Kendall Discusses "Is It Really Mito?:"

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.

2018 Mito Town Meeting

Medical Care: What Approach Works for You?

What You Should Know About Genetic Testing for Mitochondrial Disorders

How Enteric Microbiome Modulates Mitochondrial Function

BioElectron Update

Mitochondrial Replacement Therapy

Mitochondria and MitoQ: A Research Update

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

Managing the Day- to-Day of Mitochondrial Disease, a MitoAction presentation for ThriveRx Day-to-Day Management of Mitochondrial Disease from mitoaction

Mito-autism support group call and discussion of PANDAS, Jan 2017

Mito-autism support group call and discussion of PANDAS, Jan 2017

2017 Mito Town Meeting

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.

Exercise and nutrition therapy for 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.

Getting Through the Day with Mito

Getting Through the Day with Mito: Treatments, Supplements, and Humor

Molecular diagnostic testing for mitochondrial disorders

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.

Medical Homes

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 wee...

Extended School Year and Summer Camp Planning with Annette Hines, Esq.

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 yo...

Mitochondrial Medicine Society update 2016

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

Incapacity Planning and Guardianship

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.

NORD Public Policy Team

Please join MitoAction this month for a conversation with the public policy team for the National Organization for Rare Disorders (NORD).

Fatty Acid Oxidation Disorders

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?

2016 Mito Town Meeting

Updates from around the globe during the 2016 Mito Town Meeting.

Diet, Dysmotility, and Tube Feeding

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 myopathy with Dr. Bruce Cohen

Join MitoAction and Dr. Bruch Cohen as we discuss Mitochondrial myopathy.

Mito-Autism Q&A and Parent/Patient Discussion of Mitochondrial Toxicity

Mito-Autism Q&A and Parent/Patient Discussion of Mitochondrial Toxicity

Mitochondrial Disease and Toxins

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.

Mito Supplement Therapy

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 mitoc...

Back to School Tips

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.

Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) with Annette Hines, Esq. and Tai Venuti, MPH

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;

Getting Involved: Awareness Walk & Events 2015

Join Mitoaction as we discuss how to get involved with the Awareness Walk & Events in 2015.

Basics of Estate Planning and Special Needs Trusts with special guest speaker Annette Hines, Esq.

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.

Cannabis oil to treat mitochondrial disease

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 marij...

Consensus criteria from the mitochondrial medicine society with Dr Parikh

Stealth BT mitochondrial myopathy trial

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.

2015 Mito Town Meeting

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!

Complex Medical Needs and Medical Child Abuse Accusations

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.

PDCD (Pyruvate Dehydrogenase Complex Deficiency)

Psychiatric Disorders in Mitochondrial Diseases

2014 Mito Awareness Rally

Join us as we kick off a month of mito awareness!

Immune Function and Mitochondrial Disease