Audio Podcast

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

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.

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: Treatments, Supplements, and Humor

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.

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 week in navigating toward improved quality of life for their child and their families.She can be reached through www.EmpoweredAdvocacy.com

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 your child's summer experience.  Annette Hines, Esq., founding partner of the Special Needs Law Group of Massachusetts, will be speaking on the basics of extended school year planning and will answer any questions patients or caregivers may have about summertime planning.Questions to be answered include:Does my child qualify for extended school year services?How do I obtain extended school year services for my child?How does extended school year planning fit into the IEP process?What do I need to do

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

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.

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

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?

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

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.

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

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

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.

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 mitochondrial disease or dysfunctionExplore the biochemistry of various supplements and how they work in the body and in energy metabolismDiscuss compounding and understand how compounding is used in mitochondrial disease therapy

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.

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;

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