Cultivating a New Normal: A Guide for New Families with FAODs
July 26 @ 1:15 pm – 2:00 pm
When a child is diagnosed with an FAOD the world of a caregiver drastically changes. This presentation will draw on the insight of both a long-standing geneticist in the FAOD community and parent who is 17 years into the journey. Together they will explore topics that families face who are new to the journey. If you have a newborn through high schooler, this session is for you!
About the Speaker
Georgianne Arnold, MD, Phd
Dr. Arnold graduated from Indiana University with degrees in biology and chemistry, and has a Masters degree in Medical Genetics from Indiana University-Purdue University at Indianapolis. She graduated from medical school from Upstate Medical University, and completed a residency in Pediatrics at Northwestern University. Her genetics training was at the University of Colorado and she is boarded in Clinical Biochemical Genetics and Clinical Genetics.
Dr. Arnold was Clinical Director and most recently Clinical Research Director at the University of Pittsburgh. She is an Emeritus Professor, and a consultant with VMP Genetics. Dr. Arnold is the past president of the Society for Inherited Metabolic Disorders, and recipient of the Shapira award for the best member’s paper in Molecular Genetics and Metabolism. She has a long-standing interest in fatty acid oxidation disorders, working with Dr. Vockley for 13 years.
Stephanie Harry
Stephanie’s son was diagnosed in 2008 with LCHAD deficiency. She spent her son’s early years educating herself through research, journal articles, work groups, and clinicians. She worked alongside her son’s dietitian to publish a children’s book called “My Special Body” geared toward educating young children with LC-FAODs. She is passionate about education, mentorship, and advocacy. In 2022 Stephanie joined the MitoAction team to support the greater mitochondrial community.
“I am so excited to be a part of the MitoAction team! My goal is to always create a safe inquisitive space where people feel loved, listened to and have continued access to meaningful resources. I look forward to connecting with each family and patient, and feel honored to walk this journey with you!”
Contact Stephanie at sharry@mitoaction.org.
