MitoAction Expert Series

MitoAction Expert Series

By MitoActionScienceHealth & Fitness
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MitoAction Expert Series episodes

  • The Mito Cocktail Revisited

    Join MitoAction and Acton Pharmacy’s Clinical Pharmacist, Ted Toufas as we revisit and provide the latest updates about the mito cocktail! The mito cocktail is one of the front-line treatment approaches to mitochondrial disease and uses 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.

     

    About the Speaker

    Dr. Ted Toufas is a Clinical Pharmacist and Pharmacist-in-Charge of the Compounding Lab who has a Bachelor’s of Science from Worcester Polytechnic Institute in Biochemistry & Genetics, and a Doctorate of Pharmacy from MCPHS University. He has a passion for learning and imparting information to patients and colleagues. Ted has received training in compounding medications, hazardous drug compounding, veterinary compounding and Quality Assurance. Working closely with physicians and patients, he develops formulations that would best suit patient needs. Under his supervision, Acton Pharmacy’s compounding lab has gained accreditation with the Pharmacy Compounding Accreditation Board and is the first in New England (3rd in the USA) to have a certificate of distinction in hazardous medication compounding. 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.

    56 min
  • Introducing the Ultragenyx LC-FAOD Disease Monitoring Programs: Our Commitment to Advancing LC-FAOD Research Globally

    Join MitoAction, Laura Pisani-Betancourt and Kristin Voorhees from Ultragenyx Pharmaceutical on Friday, July 9th, 2021 at 12:00pm EST for our monthly expert series presentation!

    On this webinar, Ultragenyx will discuss the development of its LC-FAOD Disease Monitoring Program (DMP), which includes both an in-clinic study and an online study that are expected to launch in 2021. Participants will learn about the studies, including how insights from the LC-FAOD community have informed the DMP’s research goals, how the DMP aims to change the future of LC-FAOD research and disease management, and Ultragenyx’s plans to launch the DMP.

    *This webinar is intended for U.S. members of the MitoAction community*

    1 hr
  • Back to School...IEP's, 504 Plans and More!

    Join licensed school psychologist, Gena Padgett and high school history teacher / FAOD mom, Beth Folcher to prepare yourself for sending your child(ren) back to school by exploring the differences between IEPs and 504 plans while learning some helpful tips to support your child(ren) in school.

    1 hr 4 min
  • Ultragenyx’s LC-FAOD Odyssey Study: From Patient Experience to Patient Empowerment
    Join MitoAction, Eliza Kruger and Kristin Voorhees from Ultragenyx Pharmaceutical on Friday, May 21, 2021 at 12:00pm EST for our monthly expert series presentation!
    On this webinar, Ultragenyx representatives will discuss how insights and feedback from people living with LC-FAOD shaped the design of a new study: LC-FAOD Odyssey. This study uses digital technology developed by PicnicHealth to collate and organize medical records, allowing people living with LC-FAOD to contribute their anonymized data to advance research. Participants will learn about the study goals and how the community can participate, as well as see a demo of the technology and the opportunities it offers to patients and caregivers.
    *This webinar is intended for U.S. members of the MitoAction community*
    1 hr 1 min
  • Clinical Trials: Why you should care and why you should participate. How do we know what we know?
    Join MitoAction and Dr. Jerry Vockley from University of Pittsburgh Children’s Hospital on Friday, May 14, 2021 for our monthly expert series presentation!
    About the Speaker
    Gerard Vockley, MD, PhD, is an internationally recognized leader in medical genetics and the field of inborn errors of metabolism. He joined Children’s Hospital of Pittsburgh as chief of the Division of Medical Genetics in 2004 and was named professor of pediatrics at the University of Pittsburgh School of Medicine and professor of human genetics at the university’s Graduate School of Public Health.
    Dr. Vockley, a native of Homestead, Pa., earned a bachelor’s degree in biology from Carnegie Mellon University in 1978 and completed his medical degree and a doctorate in genetics at the University of Pennsylvania School of Medicine, Philadelphia, in 1984. Following his residency in pediatrics at the Denver Children’s Hospital in 1987, he completed a fellowship in pediatrics and human genetics at Yale University School of Medicine.
    In 1991, Dr. Vockley joined the faculty of the Mayo Clinic School of Medicine, where he was engaged in teaching, clinical service and research until he moved to Children’s Hospital of Pittsburgh. At Mayo, he earned a reputation as an exceptional clinician, establishing Mayo’s Inborn Errors of Metabolism Clinic, which is internationally recognized for excellence in the diagnosis and care of patients with those disorders. At the Mayo Clinic School of Medicine, he served as an assistant professor in medical genetics and as an associate professor of medical genetics before being named professor of medical genetics and chair of the Department of Medical Genetics in 1999. Among his accomplishments as an educator, Dr. Vockley initiated the development of a continuing education curriculum to update all staff physicians at Mayo in molecular biology and genetics and encouraged them to incorporate genetic information into their routine clinical practice.
    Dr. Vockley’s long record of groundbreaking research has earned him distinction in his field. His integrated approach to the study of inborn errors of fatty acid beta-oxidation and branched chain amino acid metabolism has led to the discovery of several new genes in the metabolic pathways and redefined these critical cellular processes. His laboratory has identified and characterized the molecular basis of three new inborn errors of metabolism in recent years. Dr.Vockley has been awarded continuous National Institutes of Health (NIH) RO1 funding since his earliest days as an independent investigator. He currently holds three NIH grants.
    Dr. Vockley is board-certified in pediatrics, clinical genetics and biochemical/molecular genetics. He has published more than 70 articles in leading genetic and biochemical journals and has received numerous honors for his work. His professional and scientific society memberships include the American Society for Clinical Investigation, Society for Inherited Metabolic Disorders, American Society of Human Genetics, American Academy of Pediatrics, American Association for
    1 hr
  • Mitochondrial Defects May Lead to Autism - Dr. Douglas Wallace - 3/5/21
    Join MitoAction and Dr. Douglas Wallace, the Director of The Center for Mitochondrial and Epigenomic Medicine at Children’s Hospital of Philadelphia (CHOP) for our March Monthly Mito Expert Series presentation titled, Mitochondrial Defects May Lead to Autism.
    To view the accompanying slides for the presentation, click here.
    1 hr 8 min
  • 2021 Town Hall Meeting - 1/15/21
    The annual town hall meeting is MitoAction’s way of kicking off the new year by sharing all that we have in store for the next 12 months!  We will hear from organizations and companies around the globe that have special opportunities, programs and projects for patients and families affected by mitochondrial disease.
    2 hr 26 min
  • Patients as Partners in Drug Development - Dr. Madhu Davies - 2/12/21
    Join MitoAction and Dr. Madhu Davies from Reneo Pharmaceuticals for our February Monthly Mito Expert Series titled “Patients as Partners in Drug Development.”
    About the Speaker:
    Dr. Madhu Davies, MB, ChB, MRCG,P FFPM, MBA, is the medical director at Reneo Pharmaceuticals. Previously, Madhu has served many roles at companies developing medicines to patients with rare . For more than 25 years, she has provided leadership and advisory services working in clinical development, safety, regulatory programs, gaining broad experience of drug development including biologics, small molecules and vaccines. Madhu has held significant pharmaceutical roles as medical director and CMO, in addition to medical affairs.
    Madhu trained in medicine in the United Kingdom and maintains an active academic interest as Visiting Professor at Cardiff University; she is Director of the Postgraduate Course in Pharmaceutical Medicine and has also edited or contributed to several textbooks and journals.
    45 min

About MitoAction Expert Series

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Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts