Authentic storytelling from rare disease families that show their true lived experience as people, not just a diagnosis

WATCH OUR MISSION FILM

Authentic storytelling from rare disease families that show their true lived experience as people,
not just a diagnosis

WATCH OUR MISSION FILM

Actively SEEKING FUNDING

Imperfect JOY® seeks to humanize the experiences of rare disease patients through filmmaking, photojournalism, and a podcast, capturing their daily lives and moments of joy to foster empathy, raise awareness, and unite the rare disease community. By sharing these authentic stories, we aim to inspire a cultural shift toward health equity and create a large audience of advocates. Support for this project will bring these powerful stories to life and drive meaningful change.

Actively
SEEKING FUNDING

Imperfect JOY® seeks to humanize the experiences of rare disease patients through filmmaking, photojournalism, and a podcast, capturing their daily lives and moments of joy to foster empathy, raise awareness, and unite the rare disease community. By sharing these authentic stories, we aim to inspire a cultural shift toward health equity and create a large audience of advocates. Support for this project will bring these powerful stories to life and drive meaningful change.

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 photos and films help rare patient advocates use their stories as a space to have conversations that start with connecting to people, not just a diagnosis.

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 photos and films help rare patient advocates use their stories as a space to have conversations that start with connecting to people, not just a diagnosis.

Detailed PROPOSAL

Detailed PROPOSAL

Film EXAMPLES

From The Heart
Hypoplastic Left Heart Syndrome

#Aubsessed
Mitochondrial Disease

Just The First Step
Atypical Choroid Plexus Papilloma

Sammy and his family went to Give Kids The World Village in Kissimmee, Florida. It’s not an unusual occurrence for families to travel to Disney, but this was an extraordinary moment for them. At one year post heart transplant, this was the first time they could travel more than 3 hours from home where they could really focus on enjoying time together as a family.

This event looked like a wedding any girl would dream of but everything about this moment was not conventional. Aubriella was battling the same mitochondrial disease that took her brother Bryce just two years earlier. Our community came together to throw her and her family a celebration of love for everyone in her life to rally around.

COVID made many things go virtual and physical therapy was no exception. After Conor’s wish was granted through Make-A-Wish Massachusetts & Rhode Island, his parents were able to use the playground he received as an essential tool for helping him through therapy and build his confidence to climb, run, jump and play!

Film EXAMPLES

From The Heart
Hypoplastic Left Heart Syndrome

Sammy and his family went to Give Kids The World Village in Kissimmee, Florida. It’s not an unusual occurrence for families to travel to Disney, but this was an extraordinary moment for them. At one year post heart transplant, this was the first time they could travel more than 3 hours from home where they could really focus on enjoying time together as a family.

Watch A Sneek Peek of Sammy's Story

#Aubsessed
Mitochondrial Disease

This event looked like a wedding any girl would dream of but everything about this moment was not conventional. Aubriella was battling the same mitochondrial disease that took her brother Bryce just two years earlier. Our community came together to throw her and her family a celebration of love for everyone in her life to rally around.

View Aubriella's Story

Just The First Step
Atypical Choroid Plexus Papilloma

COVID made many things go virtual and physical therapy was no exception. After Conor’s wish was granted through Make-A-Wish Massachusetts & Rhode Island, his parents were able to use the playground he received as an essential tool for helping him through therapy and build his confidence to climb, run, jump and play!

View Conor's Story

Support
THE RARE DISEASE AWARENESS CAMPAIGN

Support
THE RARE DISEASE
AWARENESS CAMPAIGN

Imperfect JOY® is partnering with Entertainment 2 Affect Change (E2AC) as the fiscal sponsor for this project so your donation can be tax deductible.

E2AC is a 501(c)3 nonprofit whose mission is to connect award-winning content creators, nonprofit causes, and philanthropic funders who want to share their impact through the power of story. As a fiscal sponsor, they can receive tax-deductible donations and grants to support this project and they are financially and legally responsible for the management of the funds they provide to us through these means.

Imperfect JOY® is partnering with Entertainment 2 Affect Change (E2AC) as the fiscal sponsor for this project so your donation can be tax deductible.

E2AC is a 501(c)3 nonprofit whose mission is to connect award-winning content creators, nonprofit causes, and philanthropic funders who want to share their impact through the power of story. As a fiscal sponsor, they can receive tax-deductible donations and grants to support this project and they are financially and legally responsible for the management of the funds they provide to us through these means.