Frances Changed My Life | Purple Yellow Red & Blue – A Portugal the Man Podcast | Episode 22

About this episode

This episode shares the story of Frances, a child with a rare genetic disease, and discusses the importance of advocacy and community support in rare disease awareness.

In this special episode of PYRB for the Podcastathon charity event, we share the story of Frances, the daughter of Portugal. The Man’s John Gourley and Zoe Manville, who is living with an ultra-rare and recently discovered genetic disease called DHDDS. The condition causes serious neurological symptoms and there’s currently no approved treatment.I’m joined by Mel – a PTM fan, rare disease advocate, and science communicator – who breaks down the science behind DHDDS, explains potential treatments, and shares insights into Frances’s journey and what lies ahead.Frances is one of only six known individuals in the world with her specific DHDDS variant. Her story is not only one of challenge, but of resilience, innovation, and the power of community-driven science.We explore why awareness, advocacy, and family-led foundations are essential in the rare disease world – and how you can help support Frances and others like her.Every listen, share, and donation helps bring visibility, hope, and meaningful action to the rare disease community. GoFundMe: Support Frances’s journey and the fundraising efforts for her personalized…

People in this episode

Host: Portugal The Man

Guest: Mel

Topics covered

• rare disease
• advocacy
• community support
• genetic disease
• personal stories

Keywords

• DHDDS
• rare disease
• genetic disease
• advocacy
• community-driven science
• Portugal The Man
• Frances Changed My Life

Mentioned in this episode

Organizations: Portugal. The Man, Frances Changed My Life Foundation, Global Genes

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