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 edu- cating 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.
Past Expert Series Presentations
