MitoAction Expert Series

An update from Edison Pharma on the Development of EPI-743 clinical trial for children with Leigh Syndrome.

Topics for this call include:

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:

Dr. Richard Frye is a pediatric neurologist and Chief of the Division of Neurodevelopmental Disorders at Phoenix Children's Hospital.  He received his MD/PhD from Georgetown University in 1998. He completed a residency in Pediatrics at the University of Miami, Residency in Child Neurology and Fellowship in Behavioral Neurology and Learning Disabilities at Harvard University/Children’s Hospital Boston and Fellowship in Psychology at Boston University. He holds board certifications in Pediatrics, and in Neurology with Special Competence in Child Neurology. Dr. Frye is a national leader in autism research. He has authored over 100 peer-reviewed publications and book chapters, and serves on several editorial boards of scientific and medical journals.

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 holidays comes more than the usual amount of juggling, multitasking, planning, making, going, doing the to-do list grows fast, and it seems to get longer every year. For many Mito patients, caregivers and families, the expectations of others add extraordinary stress during this season.

For adult patients, spouses, and parents of children with Mito, being maxed out on both time and energy is already your normal state. Add on all the things we do  - or want to do- during the holidays, and you've got a recipe for overload.

This month, MitoAction invited author and special guest Joan Celebi as she shares with us some ways to not just "survive" the holidays this year -- but be invigorated, refreshed, and renewed by them.

Joan Celebi is a certified life coach and special needs mom, and the author of Overwhelmed No More! The Complete System for Balanced Living for Parents of Children with Special Needs.Through internationally acclaimed tele-workshops and tele-coaching programs, Joan helps parents successfully navigate life with a child with special needs. Joan holds a Master's Degree in Education from Harvard University. 

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.

Ted Toufas is a Clinical Pharmacist and Director of Education who has a Bachelor’s of Science from Worcester Polytechnic Institute in Biochemistry & Genetics, and a Doctorate of Pharmacy from Massachusetts College of Pharmacy.  He has a passion for learning and imparting information to patients and colleagues.  His role as Director of Education has him working with staff members and prescribers to develop better therapies and outcomes for patients.  He will be developing a series of informational seminars for patients and providers in the local area.  While he works closely with physicians and patients assessing medications and new therapies, he plays an important role in the Compounding Lab with formulation development and Quality Assurance.  He has been at Acton Pharmacy in one capacity or another since 2005, and strives for a continuous improvement in the quality of healthcare for our patients.

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 relationship from many psychiatric conditions and mitochondrial dysfunction. Join us to further examine:

1. The role of mitochondria in brain function;

2. Psychiatric manifestations of mitochondrial diseases; and

3. Mitochondrial dyregulations in psychiatric disorders.

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.