MitoAction Expert Series

Meet Andrew Mele

Join in to listen to RN, Julie Gortze.

Organizations share what they have planned for the next 12 months. 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 and companies around the globe that have special opportunities, programs, and projects for patients and families with mitochondrial disease. We'll hear from the following organizations,...

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. Questions to be answered include: What is estate planning? Why should you create a plan for your estate? What does a will do? What is probate, and which assets go through it?...

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...

We had a wonderful Awareness Rally on Friday, Sept. 5, featuring people who are doing amazing things to raise awareness about mitochondrial disease. Each speaker brought great ideas to the table and truly demonstrated the diverse ways we can raise awareness in our communities. We want you to get excited and inspired about raising awareness. Below, you will find some helpful links and ideas from ou...

Frustrated with the run-around from health insurance companies? Join us this month as we discuss strategies for advocating for the diagnosis, management, and treatment of your mitochondrial disease: Questions to ask when you receive a health insurance denial How to write and get help with an appeal Easy relationship building strategies to give you the advantage Online tools and organization habits...

Dr. Matt Kline & Dr. Guy Miller

Join us with Stealth BioTherapeutics CEO Travis Wilson and others from the Stealth BT team for a live update from Stealth BT ( click here to check out their website ), information about Bendavia, and details about StealthBioTherapeutics' 2015 mitochondrial myopathy clinical trial. A Q&A opportunity is included in this important discussion. Parents, patients and families - please join us! This...

Tools for Testing Mitochondrial Disorders: The Latest Advances in Genetics and Genomics Guest speaker Dr. Richard Boles from Children's Hospital Los Angeles and Courtagen Life Sciences, Inc. to discuss: 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 cha...

Dr. Richard Frye, MD PhD, Director of Autism Research and Associate Professor of Pediatrics at Arkansas Children's Hospital to discuss: Evidence for Mitochondrial Dysfunction in Autism Spectrum Disorder Biomarkers for mitochondrial dysfunction Importance of cerebral folate deficiency/insufficiency and the folate receptor autoantibody How cerebral folate deficiency/insufficiency is diagnosed and tr...

Dr. Mark Korson from Tufts Floating Hospital for Children gives a "crash course" in interpreting lab values! Most patients with mitochondrial disease have faced a page of test results comprised of letters and numbers that would help them understand their current illness if the information made sense. CBC, CMP, LFTs, CPK, OAA and more...join us as we figure it out! CBC CMP Lactic acid pyruvic acid...

How can a service dog help a child or adult patient with mitochondrial disease? Learn more and ask questions, such as: How can service dogs help someone with mitochondrial disease? Do service dogs only help people who are deaf? What do service dogs do medically? How can my family apply for a service dog and what is our responsibility?

How can children, teens and adults with mitochondrial disease EXERCISE, especially if fatigue and exercise intolerance are hallmark symptoms of the disease? Metabolic Nurse Educator, Margaret O'Riley, from Vancouver, British Columbia shares about the research - and practical solutions - surrounding exercise and mitochondrial disease. This discussion will dig into questions that are relevant to chi...

As a follow-up discussion to Dr. Fran Kendall's presentation on "Muscle Biopsy Testing for Mitochondrial Disease", MitoAction welcomes Dr. Steve Sommer of MEDomics to discuss testing for mitochondrial disease using a blood sample. About MEDomics After 23 years in academia, Dr. Steve Sommer started MEDomics in order to apply a revolutionary technology called "NextGen sequencing" to clinical mitocho...

For someone who lives with mitochondrial disease, understanding the "big picture" is important. Dr. Koenig will explore the importance of caring for the whole patient when managing mitochondrial disease. How does each organ system affect others when looking at the "whole" person? For example, can treating anemia improve sleep? Can appropriate management of epilepsy improve a child's ability to lea...

Dr. Bruce Cohen from the Cleveland Clinic in Ohio discusses his perspective on the use of hyperbaric oxygen therapy, also known as HBOT, for people with mitochondrial disease. Hyperbaric oxygen therapy is the use of 100% oxygen at a level higher than the atmosphere.  HBOT is controversial, and has long been used to treat some conditions, such as carbon monoxide poisoning, burn inuries, and decompr...

For many years, muscle biopsy has been considered the "best" way to obtain an accurate diagnosis of mitochondrial disease.  Muscle biopsy is costly, it is invasive, and is occasionally controversial with results that can be difficult for patients and families to understand. Will there ever be an alternative to muscle biopsy testing for children and adults with suspected mitochondrial disorders?  W...

Join us this month to take a big picture look at agents that are toxic or potentially harmful to the mitochondria. Dr. Katherine Sims from Massachusetts General Hospital shares information important to everyone concerned about their health, and explains why recognizing potentially toxic agents - from medications to environmental factors - can be especially worrisome and detrimental for children an...

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? About The Speaker Abby Usen received her B.S. in Food and Nutrition Sciences and Dietetics from the University of Vermont.  She completed her dietetic internship at the Fr...

Becoming a great advocate: advice for complex patients and families, with Mark Korson MD and Maggie Orr RN Adult patients, caregivers, parents of affected children - all of us face the same challenge.  How do we get our team on board? How do we get the help we need from doctors, teachers, nurses, therapists? How do we find ways to validate symptoms that are slippery or difficult to identify? And h...

One of the front-line treatment approaches to mitochondrial disease is use of a combination, unique to each patient based on symptoms and diagnosis, of vitamins and supplements such as Coenzyme Q10, B-vitamins, L-Carnitine, Creatine and Alpha Lipoic Acid. Compounding pharmacists Saad Dinno, RPh,  and Dr. Virginia Tawa, PharmD, from Acton Pharmacy answer everything you wanted to know about the ingr...

Learn about current treatment options. About the Speaker 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 with different medications and vitamins/ supplements. Dr. Anselm is currently participating...

MitoAction welcomes psychologist Carole Slipowitz PhD and Tufts Metabolism clinic nurse coordinator Maggie Orr RN M.Ed to discuss the challenges of dealing with a diagnosis of mitochondrial disease. How do you cope with the unpredictable, invisible disease? Any chronic illness can be overwhelming - for a child, a family, or an adult with the condition.  However, due to the unpredictability, comple...

Please join us on as we welcome two experts in the field of Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) provide an overview of these public benefits for Mito patients.  Topics to be covered in this conference call include: Overview of SSI and SSDI programs; The differences between SSI and SSDI; Social Security’s definition of disability as it pertains to mito...