Meet Jo Kaur and Richie DiGeorge, parents of Riaan, a vibrant 5-year-old boy who has Cockayne syndrome, a rare and debilitating genetic disease. In this podcast episode, Riaan’s parents take listeners on an emotional journey through their lives. They reflect on their darkest days, their resilience, their small victories and their enduring hope.

🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories on our website at umassmed.edu/rarediseasesrealstories or wherever you get your podcasts.

💜 To learn more about the Riaan Research Initiative, visit the foundation’s website at: riaanresearch.org.

Follow Riaan's journey on Instagram and Facebook: @riaanresearch

💜 Cockayne diseases resources and support

National Initiative for Cockayne Syndrome

The Cockayne Syndrome Foundation

National Organization for Rare Disorders

Translational Institute for Molecular Therapeutics at UMass Chan Medical School

Amy & Friends

Viljem Julijan Association for Children with Rare Diseases

Private Facebook Support Group for Families:

Cockayne Syndrome Families

🔗 Share Riaan’s story and build awareness using the following hashtags: #RareDiseasesRealStories, #RareDiseases, #podcast

Interested in learning more about gene therapy research? Email us at: AdvancingTogether@umassmed.edu