MitoAction Expert Series

Join us with Dr. Sumit Parikh, Director of the Cleveland Clinic Neurogenetics, Metabolic and Mitochondrial Disease program, and past president of the Mitochondrial Medicine Society. Learn more about the 2014-2015 publications based on collaborations and consensus surveys completed by the Mitochondrial Medicine Society. The landmark series of publications is the first to address existing standards...

Siblings of children with disabilities play important roles in their families, and often experience similar concerns and opportunities as parents. This session will present some common issues that siblings experience and share seven simple ways that parents and providers can help minimize sibling concerns and maximize opportunities to build close bonds with siblings.

What is the mitochondrial disorder PDCD? PDCD is an abbreviation for pyruvate dehydrogenase complex deficiency, a genetic mitochondrial disorder in children which is frequently associated with lactic acidosis and neurological/neuromuscular symptoms. Join us Friday November 7th, 2014 with Dr. Peter Stacpoole from the University of Florida to learn about testing, diagnosis and treatment of PDCD. (Fr...

What is the impact of illness or infection on a patient with mitochondrial disease? Patients, parents, and healthcare providers with firsthand experience of mitochondrial disease have probably experienced the consequences of an illness or infection. Illnesses and infections have a more dramatic and prolonged impact on children and adults who suffer from mitochondrial disorders, often causing long...

Join us for an informative discussion with Dr. Richard Frye, Director of Autism Research and Director of the Autism Multispecialty Clinic at Arkansas Children's Hospital Research Institute. There is increasing evidence that mitochondrial dysfunction is associated with autism spectrum disorder. Learn more about the latest research investigating the causes of this relationship, including the role of...

Understanding the mechanisms of mitochondrial deafness Join us this month with Dr. Peter Kullar, Clinical Research Fellow at the Wellcome Trust Research Centre for Mitochondrial Disease at Newcastle University (UK) to learn about mitochondrial disease and hearing loss. Key topics include: Mechanisms of hearing and hearing loss Clinical profile, workup and diagnosis of a new patient Treatments and...

Join us for the annual "Mito Town Meeting " on Thursday Jan. 9, 2014 at noon EASTERN time (9 a.m. Pacific). The annual town meeting is our way of kicking off the new year by sharing all that is planned for the year. We'll hear from volunteers and representatives from a variety of programs and organizations. This is the meeting to attend if you want to get involved or get informed!   AGENDA Welcome...

How can you prepare your child for independence? Transition to independence is challenging and important for all kids, but helping your child make good choices on his own when he or she also has a chronic illness can be complicated. How much independence is too much? At what age do you start planning for transition and allowing your child to make choices? How can we let our kids make their own dec...

Join us with Dr. Ben Bronstein and Travis Wilson from Stealth Peptides. Stealth Peptides is a private biotech company responsible for the development of innovative mitochondrial therapeutics, including the investigational new drug "Bendavia." Bendavia has been studied in animals and is currently in Phase 2 studies in patients with cardiovascular and kidney diseases. Bendavia appears to target mito...

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? Health care is changing, for better or for worse it's a new landscape. As a result, there are many, many changes which are forc...

This topic is dramatically important to the parents of children with complex gastrointestinal presentations of mitochondrial disease.  MitoAction brings this topic to our Mito community 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...

To work or not to work...that is the question Many adults with mitochondrial disease face a difficult decision about how to financially support themselves while balancing the energy demands and potential health toll of having a job.  Working also gives many people more than just a paycheck; it can be a way to find gratification, and may be an important part of a person's identity.  When faced with...

Solace Nutrition & Medical Foods joined MitoAction to discuss: What are medical foods, and how are they regulated? What is the difference between medical foods, supplements & drugs? How do medical foods interact with the electron transport chain in the mitochondria? (Click to see the video) How do medical foods like coenzyme q10, creatine monohydrate, & D-ribose improve health and ener...

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" . Dr. Dykens shares with us today his perspectives on the relationship of mitochondrial function to overall health and discusses the potential effects of potential drug-induced mitochond...

Talking points include: What is the immune system and why is it important? Infection and mitochondrial disease Immune function in mitochondrial disease About The Speaker: Dr. Peter McGuire Dr. Peter McGuire received his MBBCh (with Honours) from the Royal College of Surgeons in Ireland in 2003. Following a combined residency in Pediatrics and Medical Genetics at Mount Sinai Medical Center in New Y...

An update from Edison Pharma on the Development of EPI-743 clinical trial for children with Leigh Syndrome. Topics for this call include: Status on EPI-743 clinical development; Status on EPI-743 US clinical trials Status on EPI-743 European clinical trials

Update by Cristy Balcells about ways to get involved and spread awareness.

Join MitoAction and Dr. Richard Frye to discuss the distinction between primary and secondary mitochondrial diagnosis. Some talking points will include: Primary mitochondrial disease (PMD) is ideally diagnosed by a known or indisputably pathogenic mitochondrial or nuclear DNA mutation. Secondary mitochondrial dysfunction (SMD) can be caused by genes encoding either function nor production of the o...

Are you OVERWHELMED? This time of year, we look forward to the joy, excitement, and fun of the holiday season: Thanksgiving, Hanukkah, Christmas, Kwanzaa, and the New Year are all occasions to rejoice and celebrate with family and friends. But if you're like most adult patients or families of children with mitochondrial disease, the holidays can get complicated - or even overwhelming. With the hol...

An informal discussion with Cristy Balcells on Mito diagnosis and Autism from our February 2011 Autism-Mito Support Meeting.

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 mitochondria...

Dr. Andrew Nierenberg from Massachusetts General Hospital to learn more about Psychiatric Disorders in Mitochondrial Diseases and Mitochondrial Dysregulation in Psychiatric Disorders. Andrew Nierenberg MD is the Director of the Bipolar Clinic and Research Program, Massachusetts General Hospital Professor of Psychiatry at Harvard Medical School. Emerging research suggests that there is a relationsh...

Join MitoAction and board-certified family physician and Adjunct Associate professor of medicine at Georgetown University, Dr. Marguerite Duane, to explore the impact of the female menstrual cycle as a predictor in rare disease and improved healthcare outcomes. An often overlooked vital, understanding the female cycle can also help us understand the evolution of rare disease symptoms.

Join MitoAction and board-certified family physician and Adjunct Associate professor of medicine at Georgetown University, Dr. Marguerite Duane, to explore the impact of the female menstrual cycle as a predictor in rare disease and improved healthcare outcomes. An often overlooked vital, understanding the female cycle can also help us understand the evolution of rare disease symptoms.