Dr. Curtis Rogers on Phelan-McDermid: Diagnosis, Newborn Screening, AI & Gene Therapy Delivery
Dr. Curtis Rogers
Senior Clinical Geneticist, Greenwood Genetic Center
Dr. Curtis Rogers is a Senior Clinical Geneticist at the Greenwood Genetic Center and a long-time leader in the Phelan-McDermid syndrome (PMS) community. In this wide-ranging conversation recorded at the 2024 Phelan-McDermid community conference, we talk about: • What inspired Dr. Rogers to pursue medicine and genetics • How Phelan-McDermid syndrome was first recognized • How families built a community even before the internet • How genetic testing evolved from early chromosome studies to today’s sequencing • Why access, wait times, and insurance can slow diagnosis • The promise—and ethical complexity—of newborn screening • Where AI is beginning to help in clinical genetics • Why delivering genetic medicines to the brain is one of the biggest real-world challenges GENEration Hope shares stories and science from the rare disease community—focused on what’s changing now, and what’s coming next. ▶️ Subscribe for more interviews: @GENErationHope_1 🌐 Learn more: generationhope.co #PhelanMcDermid #SHANK3 #RareDisease #Genetics #GeneTherapy
Key topics
- genetic diagnosis
- newborn screening
- AI
- gene therapy delivery
Chapters
- 1. Introduction
- 2. Main conversation
- 3. What families should understand
Transcript
Transcript coming soon. This page is already connected to the published YouTube interview, and the edited transcript can be added here for search and accessibility.
Related explainers and articles
What Is Phelan-McDermid Syndrome?
Phelan-McDermid Syndrome is a rare genetic condition often linked to changes involving SHANK3 on chromosome 22.
What Is Newborn Genome Sequencing?
Newborn genome sequencing looks for genetic conditions near birth, with the goal of finding actionable diagnoses earlier.
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