Maurya’s Rare Odyssey – a RAREly Told Stories film about Hereditary Spastic Paraplegia SPG4

In February of 2024 Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, on how to tell your rare disease story in video. We were so pleased with all the excellent short documentaries that resulted from this session. Three of the films will be screening at our RARE Advocacy Summit in Kansas City this September. Here’s a look at a film on Hereditary Spastic Paraplegia SPG4 by Vamsi Koduri.

“Maurya’s Rare Odyssey is an incredible ultra rare disease diagnostic journey of a 11-year-old boy Maurya and his parents in finding answers. Several diagnoses, misdiagnosis, surgeries, hospitalizations, years of therapies culminated with the diagnosis of Hereditary Spastic Paraplegia SPG4 de novo. Maurya’s parents are doing everything they can and have established a nonprofit- Maurya Koduri Foundation to create more awareness and funding to help doctors and scientists to advance their experiments towards a Cure. Maurya is full of life despite challenges and his smile and personality is a beacon of hope and Maurya’s dad, Vamsi hopes that this ultra rare disease story gets much attention it deserves and creates much awareness that will drive the CURE.

A scene from Maurya’s Rare Odyssey.

I wanted to make this film to tell this important story to the world and reach out to humanity for help. The easiest part in making the film is everything was in the mind- bits and pieces and putting them all together was also easy, but the hardest thing was when I was editing and during voice over when all the memories popped up and made me emotional. Having said that, the hardest part is the one that drives me forward to achieve my goal.

I sincerely hope that this short will get the attention it deserves and creates much awareness that will drive the CURE.

The workshop helped me in structuring my content and acted as a guiding force during the making of the film and during postproduction.”

– Vamsi Koduri