Documentary film Part 2 in development
Patients, families, scientists, and advocates work against time to transform the future for Spinal Muscular Atrophy (SMA).
About the film
Follow the families, patients, and scientists who rallied together to create the first approved treatment for Spinal Muscular Atrophy (SMA).
The SMA community shows what can happen when patients, advocates, clinicians, and researchers work together. Their collaborative approach helped create a breakthrough in medicine and accelerate treatments that improve the lives of people with genetic diseases.
Access to DNA mapping sparked a revolution that changed the arc of medicine. It set in motion the scientific journey of geneticists and researchers, alongside rare disease patients and family advocates, to create and implement the breakthrough therapy Spinraza.
The Genetics of Hope explores the complex reality of defying genetic fate, and what a cure could mean for the world.
Official SelectionDISORDER: The Rare Disease Film Festival2019Watch
Trailer 2 min
Proceeds from the film are donated to rare disease initiatives.
The team
Director, Producer & Disability Advocate
Artemis Joukowsky is an award-winning filmmaker, author, entrepreneur, educator, and disability advocate. Diagnosed with Spinal Muscular Atrophy at age 14, he has spent decades working at the intersection of storytelling, disability advocacy, and social impact. His films include The Genetics of Hope and Defying the Nazis: The Sharps’ War, which he co-directed with Ken Burns.
Filmmaker & Producer
Cray Novick is an Emmy Award–winning director, producer, and content creator whose work explores culture, technology, and human connection. Born and raised in Massachusetts, he made his directorial debut with a PBS series filmed over four years during the Cuban Thaw. He has since directed more than 25 documentary episodes for PBS, VICE, ATTN, and ESPN, winning an Emmy for Behind the Wings.
Artemis and Cray have been making films together for more than a decade. The idea for The Genetics of Hope grew from Artemis’s own questions about SMA and his desire to document his lifelong journey at the moment the first-ever treatment was being approved. They began filming and worked closely with Gareth Burghes, whose father is a rare disease researcher, to complete the film. Along the way, they interviewed hundreds of people across the SMA and rare disease communities to explore what this momentous breakthrough could mean for SMA and beyond.
While the technology and science are incredible, the story has always centered on the people behind the breakthroughs. Every rare disease is different, but there is much to share and learn between communities. Through it all, the mission is to offer education, inspiration, and ultimately, hope.
Part 1 Collaborators
The Genetics of Hope was a collaborative storytelling initiative across filmmaking, medicine, scientific research, patient advocacy, and the rare disease community.
Part 1 supported in part by Cytokinetics and No Limits Media.
The story continues
Part 1 documented the collaboration that helped transform treatment for Spinal Muscular Atrophy. Now, we are developing Part 2 to explore what comes next, and what the SMA community’s experience can teach the future of rare disease medicine.
We’re seeking patients and families willing to share their stories, along with advocates, researchers, clinicians, production partners, and supporters interested in helping bring the next chapter to life.