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

Support This CauseWork With Us

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.

Support This Cause

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.

Work With Us

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.

Support This Cause

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.

Work With Us

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 .

DONATE

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 .

DONATE

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

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

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

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.

View Sammy's Story

Solving The Riddle
Charcot-Marie-Tooth Disese

Peter was asked to lead a capital campaign for the CMT Research Foundation. He told very few people about his diagnosis because of the fear that they would see him differently, but he knew that in order to take on this role he would need to share his story. With the help of this film he was able to lead the CMTRF in raising over $1.2 million at a fundraising event.

View Peter'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

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.

Currently in Production

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

Solving The Riddle
Charcot-Marie-Tooth Disese

Peter was asked to lead a capital campaign for the CMT Research Foundation. He told very few people about his diagnosis because of the fear that they would see him differently, but he knew that in order to take on this role he would need to share his story. With the help of this film he was able to lead the CMTRF in raising over $1.2 million at a fundraising event.

View Peter'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

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.

Currently in Production