Filmmaking for rare disease patients & caregivers
to share their stories and make a difference.
Filmmaking for rare disease patients and families to share their stories and make a difference
Imperfect JOY®’s Rare Patient 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 rare patient advocates use their stories as a space to have conversations that start with connecting to people, not just a diagnosis.
Imperfect JOY®’s Rare Patient 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 rare patient advocates use their stories as a space to have conversations that start with connecting to people, not just a diagnosis.
Storytelling
TO MAKE A DIFFERENCE
Rare Disease Patient Films
Delayed or misdiagnosis, lack of information and research, limited treatment options, inequities in healthcare, immense financial burden – this list goes on. The lack of support for the rare disease community puts a large burden on families who are already dealing with so much. Individually, some diagnoses are represented by just a handful of people, but collectively rare disease makes up a group of about 30 million Americans.
How can we possibly tackle such massive problems?
Though authentic patient stories.
Patients and caregivers want to share their stories and make a difference. Patient advocacy groups (PAGs) and nonprofits supporting the rare disease community need to fundraise for treatments and cures and they need influence for policy change. Industry (biotech & Pharma) needs their staff who sit at a desk or in a lab every day to connect with the heartfelt stories that motivate them to work toward finding effective therapies. Rare Patient Films can be used to address all three of these essential needs for the rare disease community to grow and thrive, and that often starts with PAGs and nonprofits as the foundation of sharing these stories. We don’t want to just deliver a film and send them on their way. We want to guide them through how to use films in a strategic way to make the biggest impact.
Storytelling
TO MAKE A DIFFERENCE
Rare Disease Patient Films
Delayed or misdiagnosis, lack of information and research, limited treatment options, inequities in healthcare, immense financial burden – this list goes on. The lack of support for the rare disease community puts a large burden on families who are already dealing with so much. Individually, some diagnoses are represented by just a handful of people, but collectively rare disease makes up a group of about 30 million Americans.
How can we possibly tackle such massive problems?
Though authentic patient stories.
Patients and caregivers want to share their stories and make a difference. Patient advocacy groups (PAGs) and nonprofits supporting the rare disease community need to fundraise for treatments and cures and they need influence for policy change. Industry (biotech & Pharma) needs their staff who sit at a desk or in a lab every day to connect with the heartfelt stories that motivate them to work toward finding effective therapies. Rare Patient Films can be used to address all three of these essential needs for the rare disease community to grow and thrive, and that often starts with PAGs and nonprofits as the foundation of sharing these stories. We don’t want to just deliver a film and send them on their way. We want to guide them through how to use films in a strategic way to make the biggest impact.
Media
Partners
Media
Partners
Support this cause
Donate, Share, Connect
We have a passion for helping the rare disease community share their stories. We help rare disease nonprofits utilize film as a unique way to fundraise and advocate for change with policymakers. Please support this mission by giving a charitable donation, helping spread the word about these films, or connecting us with important partners to help us fulfill this mission.
Work with us
PAGs and Nonprofits
If you are a patient advocacy group (PAG) or another nonprofit supporting the rare disease community, we want to help you fundraise and advocate for change. We create unique virtual events that utilize films as the foundation of creating conversations that move, connect, and inspire audiences to further support your mission. There are a limited number of scholarships available.
Support this cause
Donate, Share, Connect
We have a passion for helping the rare disease community share their stories. We help rare disease nonprofits utilize film as a unique way to fundraise and advocate for change with policymakers. Please support this mission by giving a charitable donation, helping spread the word about these films, or connecting us with important partners to help us fulfill this mission.
Work with us
PAGs and Nonprofits
If you are a patient advocacy group (PAG) or another nonprofit supporting the rare disease community, we want to help you fundraise and advocate for change. We create unique virtual events that utilize films as the foundation of creating conversations that move, connect, and inspire audiences to further support your mission. There are a limited number of scholarships available.
Working together
TO MAKE A DIFFERENCE
This community is faced with significant challenges. We hope this docuseries can unite the patients, families, advocacy groups, and industry supporters in the common cause of bringing awareness, resources, and understanding to those struggling with rare diagnoses.
We believe the best way to make these documentaries possible is through pooling our resource, both financial and through audience reach, to make the biggest impact. Imperfect JOY® is partnering with Entertainment 2 Affect Change (E2AC) as a fiscal sponsor to receive charitable donations and grants .
Working together
TO MAKE A DIFFERENCE
This community is faced with significant challenges. We hope this docuseries can unite the patients, families, advocacy groups, and industry supporters in the common cause of bringing awareness, resources, and understanding to those struggling with rare diagnoses.
We believe the best way to make these documentaries possible is through pooling our resource, both financial and through audience reach, to make the biggest impact. Imperfect JOY® is partnering with Entertainment 2 Affect Change (E2AC) as a fiscal sponsor to receive charitable donations and grants .
Executive Producers
Patrick James Lynch
Award-Winning Filmmaker, CEO of Believe Limited & Founder of Bloodstream Media
Effie Parks
Rare Disease Mom & Podcast Host,
Once Upon A Gene
Entertainment 2 Affect Change
Fiscal Sponsor
Advisors
Kirsten Rutherford
Creative Director for World Wish Day, Executive Creative Director at TBWAChiatDay
Mike McKenzie
CEO of the Dream Factory
Tami O’Brien
37 Years & 1st Employee of Give Kids The World Village
Michael Dunsky
Mortgage Loan Officer, Fairway Mortgage Corporation
Executive Producers
Patrick James Lynch
Award-Winning Filmmaker, CEO of Believe Limited & Founder of Bloodstream Media
Effie Parks
Rare Disease Mom & Podcast Host,
Once Upon A Gene
Entertainment 2 Affect Change
Fiscal Sponsor
Associate Producers
Tyler Gregory
Wish & Marketing Director, A Special Wish Dayton
Halsey Hendrickson
Rare Disease Mom & Photographer, Denali & Co.
Advisors
Kirsten Rutherford
Creative Director for World Wish Day, Executive Creative Director at TBWAChiatDay
Mike McKenzie
CEO of the Dream Factory
Tami O’Brien
37 Years & 1st Employee of Give Kids The World Village
Michael Dunsky
Mortgage Loan Officer, Fairway Mortgage Corporation
Jacose Bell
Sr. Patient Advocacy Lead, Spark Therapeutics, Inc.
Singer/Songwriter
Andrew Marshall
Wish Recipient, Singer & Songwriter, Andrew Marshall Music
Rare disease doesn’t just affect kids, but I believe their voices are an important piece that is often missing from advocacy efforts. If there is one thing we can all relate to it’s childhood, and in the space they create for us to see joy so visibly present even amidst the challenges they face everyday, I hope we all may be more willing to acknowledge that change needs to happen so these children and families can have access to the care they need and stand beside them in the fight for what they deserve.
This collection of short films featuring patients and families battling rare disease shares authentic stories in a way that is relatable, emotional, and powerful.
Story Gallery
Story Gallery
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.
Running With Victory
Trisomy 13
Because Victory had a prenatal diagnosis of Trisomy 13, Brian and Corrine were encouraged to terminate the pregnancy and then told they would only be offered comfort care after birth. After a long fight to get her care, she was able to be transferred to Boston Children’s Hospital. She is now a spunky, happy, vibrant 4 year old.
#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.
Just The First Step
Rare Brain Tumors
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!
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.
Running With Victory
Trisomy 13
Because Victory had a prenatal diagnosis of Trisomy 13, Brian and Corrine were encouraged to terminate the pregnancy and then told they would only be offered comfort care after birth. After a long fight to get her care, she was able to be transferred to Boston Children’s Hospital. She is now a spunky, happy, vibrant 4 year old.
#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.
Just The First Step
Rare Brain Tumors
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!