How a Parent-Led Movement Grows: Sue Lomas (Phelan-McDermid Syndrome Foundation)
Sue Lomas
Phelan-McDermid Syndrome Foundation community leader
About this conversation
Sue Lomas helped build the Phelan-McDermid Syndrome community in the earliest days—when families were scattered, information was scarce, and finding “your people” took persistence.
In this conversation, Sue and I talk about how rare-disease communities form, why early diagnosis and genetics matter, and how parent-led foundations can accelerate research by connecting families, clinicians, and scientists.
We also explore the emotional side of the journey: the turning points that reshape what you believe is possible, the role of family support behind the scenes, and what purpose looks like after stepping away from a long mission.
If you’re a rare disease parent, advocate, researcher, or someone who cares about the future of gene-based medicine—this one is for you.
If this resonates, please like, subscribe, and share it with a family who needs hope today.
Key topics
- parent-led communities
- family advocacy
- foundation building
Transcript
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