Pediatric Rare Disease Collection
PARTNER & SPONSOR PITCH DECK

Pediatric Rare Disease Collection
PARTNER & SPONSOR PITCH DECK

Mission


Stories that highlight both the challenges and joy of families facing a pediatric rare disease diagnosis

We want to share these stories as a way of saying, “We see you. We see your struggle. We see your pain. We see the beauty of how you find joy in everyday, ordinary moments while also being weighed down by the emotional pain that sometimes seems to never end.”

There is often a lack of awareness and understanding about the challenges and struggles faced by children and families dealing with pediatric rare disease. This can lead to stigmatization, isolation, and limited support for those affected by pediatric critical illness. Through documentaries, short films, photos, blogs, and a companion podcast we hope to cultivate compassion, kindness and connectedness when you step into the lives of these families’ joy and pain, while being a powerful reminder to embrace your own imperfect joy.

Mission


Stories that highlight both the challenges and joy of families facing a pediatric rare disease diagnosis

We want to share these stories as a way of saying, “We see you. We see your struggle. We see your pain. We see the beauty of how you find joy in everyday, ordinary moments while also being weighed down by the emotional pain that sometimes seems to never end.”

here is often a lack of awareness and understanding about the challenges and struggles faced by children and families dealing with pediatric rare disease. This can lead to stigmatization, isolation, and limited support for those affected by pediatric critical illness. Through documentaries, short films, photos, blogs, and a companion podcast we hope to cultivate compassion, kindness and connectedness when you step into the lives of these families’ joy and pain, while being a powerful reminder to embrace your own imperfect joy.

Collaborators

Collaborators

We need your help for these stories to make an impact

Through storytelling in various art forms, we hope to raise awareness about the challenges these families endure and provide a powerful example of embracing imperfect joy through adversity.
By aligning with our mission, your company will be recognized as a major force in raising awareness for pediatric rare disease.
Stories currently in production include hypoplastic left heart syndrome, organ donation, trisomy 13, tracheostomy care, and mitochondrial disease.

We need your help for these stories to make an impact

Through storytelling in various art forms, we hope to raise awareness about the challenges these families endure and provide a powerful example of embracing imperfect joy through adversity.
By aligning with our mission, your company will be recognized as a major force in raising awareness for pediatric rare disease.
Stories currently in production include hypoplastic left heart syndrome, organ donation, trisomy 13, tracheostomy care, and mitochondrial disease.

Currently in Production


Currently in Production


Documentary

Running With Victory
Premiere anticipated 2024

An inspirational story of a dad who is running for his daughter, Victory, in the Boston Marathon. Because Victory was diagnosed with Trisomy 13, Brian and his wife, Corrine, were encouraged to terminate the pregnancy and then told they would only be offered comfort care after her birth. It wasn’t until they found one doctor who supported their decision to fight for their daughter’s life that they were given orders to have her transferred to Boston Children’s Hospital where she spent 6 months in the NICU. Now she is a spunky, happy, vibrant 4 year old who, despite having a lot of complex medical needs, is most undoubtedly a beautiful life that is worth fighting for. They want to get her story out there to make a change for other families who are struggling with getting support through rare pediatric diseases.

Documentary

Running With Victory
Premiere anticipated 2024

An inspirational story of a dad who is running for his daughter, Victory, in the Boston Marathon. Because Victory was diagnosed with Trisomy 13, Brian and his wife, Corrine, were encouraged to terminate the pregnancy and then told they would only be offered comfort care after her birth. It wasn’t until they found one doctor who supported their decision to fight for their daughter’s life that they were given orders to have her transferred to Boston Children’s Hospital where she spent 6 months in the NICU. Now she is a spunky, happy, vibrant 4 year old who, despite having a lot of complex medical needs, is most undoubtedly a beautiful life that is worth fighting for. They want to get her story out there to make a change for other families who are struggling with getting support through rare pediatric diseases.


Documentary

Super Sammy Receives a Heart
Premiere anticipated 2024

This 5-year-old and his family are preparing to go on vacation to Give Kids The World Village in Kissimmee, Florida. It’s not an unusual occurrence for families to travel to the Florida Parks, but for them this is an extraordinary moment. At one year post heart transplant, this will be the first time they will be able to leave more than 3 hours from home. They described this opportunity as “the gateway to the rest of their lives”.

Along with sharing Sammy’s story, his family wants to recognize that another family is morning the loss of their child one year go. They want to thank this family for literally giving Sammy life through their son’s organ donation as well as all those who have done the same, and to encourage anyone who might be on the fence about being on the donor list to sign up.

Documentary

Super Sammy Receives a Heart
Premiere anticipated 2024

This 5-year-old and his family are preparing to go on vacation to Give Kids The World Village in Kissimmee, Florida. It’s not an unusual occurrence for families to travel to the Florida Parks, but for them this is an extraordinary moment. At one year post heart transplant, this will be the first time they will be able to leave more than 3 hours from home. They described this opportunity as “the gateway to the rest of their lives”.

Along with sharing Sammy’s story, his family wants to recognize that another family is morning the loss of their child one year go. They want to thank this family for literally giving Sammy life through their son’s organ donation as well as all those who have done the same, and to encourage anyone who might be on the fence about being on the donor list to sign up.

Audience


The type of people who will watch the docuseries outside of our specific target audience are those who don’t mind letting a tear fall during a movie about a dog (because they all know when they start it they will get them right in the feels.) They might watch shows like America’s Got Talent because they are empathetic with the highlights shared about authentic, vulnerable stories of participants overcoming immense struggle. They are excited to cheer them on and their eyes well up when the yet-unknown star rocks their performance. These types of people are likely to watch a story about pediatric illness as long as they come to expect a feel-good, fill-you-to-the-brim-with emotion moment that keeps them coming back for more.
This right here is the little corner of the world that we hope to instill with more compassion, kindness, and a greater sense of connectedness to each other.

Audience


The type of people who will watch the docuseries outside of our specific target audience are those who don’t mind letting a tear fall during a movie about a dog (because they all know when they start it they will get them right in the feels.) They might watch shows like America’s Got Talent because they are empathetic with the highlights shared about authentic, vulnerable stories of participants overcoming immense struggle. They are excited to cheer them on and their eyes well up when the yet-unknown star rocks their performance. These types of people are likely to watch a story about pediatric illness as long as they come to expect a feel-good, fill-you-to-the-brim-with emotion moment that keeps them coming back for more.

This right here is the little corner of the world that we hope to instill with more compassion, kindness, and a greater sense of connectedness to each other.

Reach


We are in a growth phase, building our audience on Instagram (currently 424 followers) and Facebook (929 followers). Our podcast reached #3 in the charts for Apple Podcasts in the US for Visual Arts when it launched. To give an idea of our potential reach for the Pediatric Rare Disease Collection, here are numbers for our committed partners that have agreed to share our content through Instagram (IG) &/or Facebook (FB):

Give Kids The World Village: IG 51.9k + 208k followers
Entertainment 2 Affect Change: IG 895 + FB 922 followers + streaming app
Dream Factory HQ: 601 IG + 3k FB followers
A Special Wish Dayton: 863 IG + 5.6k FB followers
Once Upon A Gene: 22.1k IG + 1.7k FB followers + podcast
Rare Patient Voice: 7.8k IG + 44k FB followers + 195,000 email list

Short films, documentaries, blogs, photos and podcasts will also be shared by participating families, many of whom have active followers. For example, the Jones family has 2.5k followers on the “Super Sammy’s Heart Journey” page and whenever they have an important update their local news stations ask to do a follow-up story.

Reach


We are in a growth phase, building our audience on Instagram (currently 424 followers) and Facebook (929 followers). Our podcast reached #3 in the charts for Apple Podcasts in the US for Visual Arts when it launched. To give an idea of our potential reach for the Pediatric Rare Disease Collection, here are numbers for our committed partners that have agreed to share our content through Instagram (IG) &/or Facebook (FB):

Give Kids The World Village: IG 51.9k + 208k followers
Entertainment 2 Affect Change: IG 895 + FB 922 followers + streaming app
Dream Factory HQ: 601 IG + 3k FB followers
A Special Wish Dayton: 863 IG + 5.6k FB followers
Once Upon A Gene: 22.1k IG + 1.7k FB followers + podcast
Rare Patient Voice: 7.8k IG + 44k FB followers + 195,000 email list

Short films, documentaries, blogs, photos and podcasts will also be shared by participating families, many of whom have active followers. For example, the Jones family has 2.5k followers on the “Super Sammy’s Heart Journey” page and whenever they have an important update their local news stations ask to do a follow-up story.

Meet the Director


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.

CONTACT MELODY

Meet the Director


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.

CONTACT MELODY

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


Nick Hudson
Executive Director, Entertainment 2 Affect Change

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


Nick Hudson
Executive Director, Entertainment 2 Affect Change

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

Fiscal Sponsor


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) non-profit organization committed to producing high quality digital, cinematic, and live entertainment for the express purpose of bringing positive change to underserved health and social communities. Please consider giving a donation to make this series possible.

DONATE

Fiscal Sponsor


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) non-profit organization committed to producing high quality digital, cinematic, and live entertainment for the express purpose of bringing positive change to underserved health and social communities. Please consider giving a donation to make this series possible.

DONATE

Timeline


September 2023
Premiere of short film at Global Genes RARE Advocacy Summit

April 2024
A fun and colorful fundraiser in Worcester, MA. A representative of each family to be featured will be in the splatterbooth alongside a local celebrity (attendees TBD). The community is invited to attend as an observer or a painter as we laugh, build bonds, and take photos of the splatter-paint aftermath!

September 2024
Celebrating a Year of Stories. We will invite all of the families we featured throughout the year and all those who supported them along the way for a night of art, connecting, and fun at Apex Entertainment in Marlborough, MA. Anticipated September 2024.

Considerations

This timeline is subject to change. The number of stories we produce each year is largely dependent on our access to funds. Film festivals have varied deadlines so although we will apply in 2024 we might not see acceptances until 2025.

View a Detailed 3 year Timeline

Timeline


September 2023
Premiere of short film at Global Genes RARE Advocacy Summit

April 2024
A fun and colorful fundraiser in Worcester, MA. A representative of each family to be featured will be in the splatterbooth alongside a local celebrity (attendees TBD). The community is invited to attend as an observer or a painter as we laugh, build bonds, and take photos of the splatter-paint aftermath!

September 2024
Celebrating a Year of Stories. We will invite all of the families we featured throughout the year and all those who supported them along the way for a night of art, connecting, and fun at Apex Entertainment in Marlborough, MA. Anticipated September 2024.

Considerations

This timeline is subject to change. The number of stories we produce each year is largely dependent on our access to funds. Film festivals have varied deadlines so although we will apply in 2024 we might not see acceptances until 2025.

View a Detailed 3 year Timeline

Support
THE SERIES


Support
THE SERIES


Imperfect JOY®
Melody Joy Paine
Filmmaker, Photographer, & Storyteller
Privacy Policy

© 2024 Imperfect JOY® is a registered trademark of Imperfect JOY®, LLC. All rights reserved.

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To show your support of this project before the campaign launch, subscribe to the email list using the form below. Your subscription will make a significant difference in helping us spread the word and gather momentum for this cause.