The film that touches on the rare disease #SpinalMuscularAtrophy has just premiered, and already families affected by rare conditions have expressed interest in watching it.

 

Huge thanks to volunteer Nathan’s parents for helping connect the dots behind the scenes.

Grateful to Codex Genetics, #AvenueFinancialGroup and Rare Power Limited for their generous support.

 

Last Saturday, we hosted a private charity screening of #MyFirstOfMay at #K11ArtHouse, inviting families living with rare diseases to enjoy the film together.

 

The movie sheds light on the challenges faced by rare disease patients and their caregivers, offering a heartfelt portrayal of their journey.

It also features a special cameo by Wai Kwan and Chan Tsz Kin who suffering DuchenneMuscularDystrophy.

Many in the audience were moved to tears, reaching for tissues as they watched the film.

 

During the post-screening sharing session, Gigi’s mother—whose son lives with spinal muscular atrophy—deeply resonated with the lines spoken by the mother character portrayed by #GigiLeung.

 

The film’s protagonist, who loves to draw, reminded YY’s mother of her own daughter, who shares the same passion for art.

 

Professor Ho Yin Chan, co-founder of Rare Power and professor at the School of Life Sciences, Faculty of Science, CUHK, shared his insights from years of rare disease research.

 

Several rare disease patients seized the opportunity to surround the professor and seek his advice.

 

We hope there will be more opportunities like this in the future to connect, reflect, and share.