MitoAction Expert Series

Interview with the Director of MitoAction.org; Cristy Balcells.

Join MitoAction in an informative and exciting discussion with disability advocate and attorney Valerie Powers Smith as she brings to light issues regarding health care insurance and how to maximize coverage (e.g., understanding your plan, how to get things covered with appropriate medical necessity documentation, and appeals). She will also discuss other disability care issues, such as Medicaid, SSI benefits and managing the disabled person’s assets/income for future and continued eligibility; as well as managing parental estate concerns with proper estate planning and special needs trusts.

Guest speaker and attorney Valerie Powers Smith took patients and parents on a crash course in the area of disability law. “If I could emphasize one thing to all people with mitochondrial disease, it would be the importance of proactive planning, and understanding the basics about everything from your estate plan to your insurance benefits.”

The impact of the COVID-19 pandemic on medically fragile populations, who are at higher risk of severe illness and sequelae, has not been well characterized. Viral infection is a major cause of morbidity in children with mitochondrial disease (MtD), and the COVID-19 pandemic represents an opportunity to understand host-pathogen interactions. This talk will summarize a number of recent research efforts to understand the impact of COVID-19 on the mitochondrial community.

Learn about the new draft CDC Opioid Guideline, how it impacts the mito community and how you can raise your voice to address important topics still to be decided by the CDC.

We will hear from:

Join MitoAction and Dr. Jan Smeitink, CEO of Khondrion for our our March Expert Series presentation. MELAS spectrum (m.3243A>G) disorders belong to the most frequently encountered group of primary mitochondrial diseases with an unmet medical need for treatment development. Following an introduction of the clinical disease spectrum Dr. Smeitink will discuss the development and state-of-art of Khondrion’s lead product sonlicromanol.

Join MitoAction and Dr. Mark Korson, VMP Genetics, as he discusses sick days, navigating the ER as a patient, and the importance/challenges of protocol letters within the mitochondrial disease community.

About the Speaker

Dr. Mark Korson graduated in medicine from the University of Toronto and completed a pediatric residency at Toronto’s Hospital for Sick Children, followed by a genetics/metabolism fellowship at Boston’s Children’s Hospital. He directed the metabolic clinics at Boston Children’s Hospital until 2000 and across town at Tufts Medical Center until 2014. He co-founded and co-directs the North American Metabolic Academy, the premier educational experience around metabolic disease for genetics trainees on this continent. In 2017, he joined VMP Genetics as Director of Education and Physician Support Services, providing remote assistance to clinicians caring for patients with proven or suspected metabolic disease. He also directs a very active education program that addresses knowledge gaps among non-genetic physicians, as well as non-physician health professionals who work in metabolic clinics but who have never had any formal training in this specialty. He initiated and oversees at VMP Genetics the Patient-Teacher Registry and Patient-Teacher Video Catalog, with the aim of ensuring that the patient voice plays a bigger role in the education of health professionals. Regionally, he is on the board of the New England Regional Genetics Network, and as a founding board member of Rare New England, hosts their annual Rare Disease Day Speakers Series in New England and their online Genetics Career Fairs.

Join MitoAction and Metabolic Dietitian, Casey Burns to learn tips on navigating diets and finding the balance with GAII. We will tackle topics related to nutrition, balancing low-fat/low-protein diets, nutritional needs for those with and without a g-tube, and much more! A question and answer time will follow the presentation!

About the Speaker

Casey Burns has been a metabolic dietitian at Children’s Hospital Colorado for 15 years. She has co-authored many patient education materials and articles on metabolic disorders and loves working hands-on with patients to help them better understand their diagnosis.

Join Dr. Matt Klein from PTC Therapeutics , MitoAction and Cure Mito for an exclusive webinar discussing the history of clinical research in Leigh Syndrome, the evolution of PTC-743 and the MIT-E Study!

Join Marcelle Longlade; yoga teacher, chronic condition advocate, biomedical engineer, and devoted entrepreneur for a chair yoga session and discussion about relieving some stress during the upcoming holiday season!

About the Speaker:

Marcelle Longlade is a yoga teacher, biomedical engineer, and devoted entrepreneur. She is a passionate advocate for people living with chronic conditions and disabilities because Marcelle is one of those people too. She has had a life-long journey battling complex health conditions, mainly FMF, Narcolepsy Type 1, and hEDS. Marcelle created the Chronically Surviving advocacy blog, where she shares stories from her life. As a result, others feel open to sharing their narratives to help spread awareness and develop a sense of community and belonging. The second part of her platform and business is called Asintmah Healing. She offers physical, emotional, spiritual, and practical support using a holistic model of care, specifically for those living with chronic health conditions.

Resources Shared:

The Spoon Theory - https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Marcelle's Blog (Chronically Surviving) - https://www.chronicallysurviving.com/

Join MitoAction and Dr. Richard Boles for our November Mito Expert Series presentation titled: Whole genome sequencing with comprehensive re-analysis in undiagnosed or unclear causes with mitochondrial dysfunction: How this can lead to improved diagnosis, treatment, and clinical outcomes.

Dr. Boles will talk with us about the Neurabilities NeuroGenomics Program and how we can make exact diagnoses using whole genome sequencing, translate that into treatments, and improve clinical outcomes. He will also share information with us about the NeuroNeeds product line.

Click here for the accompanying slides.