Traveling with an FAOD

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 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.

Tasia Rechisky

Tasia Rechisky is a patient, rare disease advocate and writer. Living for the past 30 years with a rare fatty acid oxidation disorder (FAOD) called VLCADD (very long chain acyl-coa dehydrogenase deficiency), she has dedicated her adulthood to advocating and sharing lessons learned with the rare disease community. She started in college giving presentations to science and medical students about life as a patient, helping these students connect their studies to real patients.

Tasia has participated on the Ultragenyx Fatty Acid Oxidation Disorder Patient Leadership Council for several years during which time she helped coordinate a patient group to go to the FDA to testify on a groundbreaking drug. She is a contributor to the “Mighty” and other publications such as,  “Mental Health America” on both chronic and rare disease.  She is  most interested in how to stay psychologically healthy while battling a rare and/or chronic illness. Recently, she testified on both federal and state-level legislations to create a Rare Disease Advisory Council, which now has an active rare disease advisory council. She is a board member and DE&I subcommittee chair of Rare New England, an organization dedicated to bringing together and provide resources to those touched by rare and complex diseases. She is also an advisory council member for Rare Disease Legislative Associates (RDLA).