(2022) Day 5: Ask a Family Member

Moderator:
Dr. Lesha D. Shah, MD
Title: Assistant Professor, Psychiatry, Mount Sinai Icahn School of Medicine; Co-chair, PGTME
BIO: Dr. Shah is assistant clinical professor of psychiatry and co-chair of the Pediatric Gene Therapy and Medical Ethics Working Group (PGTME) at the NYU Grossman School of Medicine. Her primary academic focuses are pediatric research ethics and physician perspectives around medical decision-making. She studies issues of consent as they interface with innovative medicine, developmental disability, and family complexity. She is dedicated to medical education across the undergraduate to graduate medical education continuum and serves on the institutional review board at Mount Sinai.
Panelists:
Dr. Danielle Jonas, MSW, LCSW
Title: Clinical Social Worker/Therapist
BIO: Dr. Jonas is a Manhattan-based child, adolescent and adult psychotherapist committed to understanding individual perspectives and experiences. She believes that quality of life experience is subjective and that we all feel validated and supported when our voices are heard and respected. She is currently pursuing her PhD in Social Work at New York University. Previously, she worked as a pediatric palliative care social worker at Children's Hospital Los Angeles. She is fellowship trained in interdisciplinary pediatric palliative care from Harvard University/Boston Children's Hospital/Dana Farber Cancer Institute. She holds a Master's degree in Social Work from Indiana University, as well as bachelor's degrees in Psychology and History from Indiana University.
Dr. Maria Jose Contreras, PhD
Title: Associate Professor, Theatre, Columbia University; patient mother
BIO: Dr. Contreras is the mother of Franco (8 years old) and Julian (6 years old), both of them affected by Duchenne Muscular Dystrophy. In 2019 the family moved from Chile to the US with the hope of enrolling the boys in a gene therapy clinical trial. Franco was enrolled in 2019 and Julian in 2021. They have now both received gene therapy for DMD and continue to be followed up by the clinical trial team.
Mr. Gabriel McFadyen
Title: Patient Sibling
BIO: Mr. Gabriel McFadyen is a teenager living in rural Ontario. Following a chance to gain a life-saving gene therapy treatment in Italy for his brother Isaac, he took half a year off school to live in Italy with his family while Isaac participated in a gene therapy clinical trial.
Mr. Isaac McFadyen
Title: MPS VI gene therapy trial participant & patient advocate
BIO: Mr. Isaac McFadyen is an 18-year-old with MPS VI, a rare genetic disease. With the support of his parents and brother Gabriel, he traveled to Italy for 6 months to participate in a gene therapy clinical trial. He lives in rural Ontario with his parents, brother, and 3 cats.
Mr. Matthew Vo, BS
Title: Nursing Assistant; former Intern, PGTME
BIO: Mr. Vo is a graduate of the University of Washington. He has a BS in Public Health - Global Health with the intent to apply to medical school to pursue pediatrics. During his time in university, Mr. Vo has focused on issues and activities related to serving youth and rural populations. This involves leading two campus organizations: "Huskies for Kids," which works with Seattle underserved youth, and "Health Care Alternative Spring Break," which plans 20+ medical shadowing trips in rural WA to expose students to rural health. He was also the 2021-2022 Intern for PGTME.