MitoAction Expert Series

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.

Dr. Pat O’Malley from Massachusetts General Hospital talks about long-term care and quality of life support for adults and children with mitochondrial disease.   This month’s meeting is held in loving memory of Christopher A. Clark, whose family remained dedicated to helping him have the best quality of life possible every day. About the Speaker Dr. O’Malley has cared for several families with mit...

lanning for your future with Mito… a workshop for parents & adult patients Monthly International Teleconference Outreach “It feels like each day is all I can handle – how can I possibly plan for the  future ??” Living every day with mitochondrial disease as an adult patient or a parent caring for an affected child can be completely consuming and overwhelming. Many of us forget or put off think...

MitoAction Interview with Stephen

MitoAction Interview with Jamie Emory

The possible relationship between metabolic disorders, elevated lactic acid levels, and features of autism spectrum disorder have been described in the medical literature since the early 90’s.  In fact, much research exploring the correlation between autism or ASD (autism spectrum disorder) and mitochondrial dysfunction has been published throughout the last decade, long before the Hannah Poling c...

J oin us this month with one of Atlanta’s most honored occupational therapists, Susan Orloff, OTR/L.  Susan is owner of Children’s Special Services and has over 30 years experience helping children in both schools and the clinical setting.  Susan brings fresh perspective and ideas to help adults AND children with mitochondrial disease through her hands-on experiences.   Read Susan’s article on “Un...

MITO Meeting: MONTHLY INTERNATIONAL TELECONFERENCE OUTREACH Join us with Dr. Katherine Sims from Massachusetts General Hospital as we take a closer look at understanding genetic inheritance patterns of mitochondrial disease.

Teen Interview with Harrison

Teen Interview with Olivia