Imperfect JOY®’s Films focus on narrative storytelling – I meet patients and families in their home where they are most comfortable being themselves to share their journey from the perspective of both the challenges they face and the joy they experience in moments spent with their family. Relatable, emotional, and inspiring films help patient advocates use their stories as a space to have conversations that start with connecting to people, not just a diagnosis.
Imperfect JOY®’s Films focus on narrative storytelling – I meet patients and families in their home where they are most comfortable being themselves to share their journey from the perspective of both the challenges they face and the joy they experience in moments spent with their family. Relatable, emotional, and inspiring films help patient advocates use their stories as a space to have conversations that start with connecting to people, not just a diagnosis.
We believe that sharing families’ stories can help those within this community to not feel alone in their journey. Even for those who have never been through something like this, we can all relate to the common human experience of childhood. Through that shared space we hope we can inspire others to support the Rare Disease Community in times of need and stand with them to fight for the causes that are most important to helping these children and families. In order to achieve this, we bring together families who want to share their stories, advocacy groups who can help share them with the rare community, and industry partners who need stories like these to connect their researchers and advocates to the heart-felt stories that keep them inspired to continue helping rare patients.
MELODY joy paine
Founder & Director
Since 2016, I have used photography and filmmaking to capture the joy found in families’ everyday, ordinary moments. Through volunteer bereavement sessions, I helped families facing grief remember their loved ones and have a safe space to talk about loss. In order to create a concept film for The Imperfect JOY® Docuseries, I was awarded the Sony Alpha Female+ grant, an honor given to only 24 women who create extraordinary art that challenges tradition, fight for important causes, and hold the torch of creativity to light the way for those coming behind them.
MELODY joy paine
Founder & Director
Since 2016, I have used photography and filmmaking to capture the joy found in families’ everyday, ordinary moments. Through volunteer bereavement sessions, I helped families facing grief remember their loved ones and have a safe space to talk about loss. In order to create a concept film for The Imperfect JOY® Docuseries, I was awarded the Sony Alpha Female+ grant, an honor given to only 24 women who create extraordinary art that challenges tradition, fight for important causes, and hold the torch of creativity to light the way for those coming behind them.