After co-directing Defying the Nazis with documentarian Ken Burns, Joukowsky turns the camera on a story he’s been living his whole life. “I have Type 3 Spinal Muscular Atrophy, and after twenty years of research we are closer than ever to a cure”. Joukowsky believes telling these stories are critical for raising awareness and accelerating the breakthrough work that is already being done.
WHAT IS SMA?
Spinal Muscular Atrophy (SMA) is an often fatal genetic disease affecting the motor nerve cells in the spinal cord. SMA causes progressive weakness and muscle degeneration. Individuals with SMA may lose their ability to walk, breathe, or eat. SMA, which can strike at any age, is the most common genetic cause of death in infants.
SMA’s community of researchers has worked tirelessly toward a cure. On December 23, 2016 the FDA approved Spinraza – the first drug ever approved for the treatment of SMA. Spinraza offers great hope to those living with SMA, and is a model for other diseases that are searching for a cure of their own.
THE FILM PROJECT
The film follows the long search for a cure for Spinal Muscular Atrophy (SMA), and tells the larger socio-economic impact of this revolutionary moment in science for those who face other diseases. As someone who has lived with SMA all his life, Artemis is now turning the camera on himself and others with SMA to ask what the possibility of a cure means for our society, and for being human over the next century.
The filming process will bring together a community network of patients, doctors, and researchers to stimulate dialogue and improve treatment therapies. In-depth interviews with medical experts and personal insights from those with the disease will explore what is at stake, both scientifically and spiritually. Within this collaborative environment, physicians will share information and track progress. Patients will learn from one another, ask questions and make informed decisions about their treatment. We are on the verge of a cure for SMA. By sharing these stories, our project will foster innovation and empower everyone to keep fighting for a cure.
Your donation will help fund the first round of production in which we follow Sprinraza patients through their treatment journey and build our community network. After many years of dedicated research, Sprinraza provides hope for individuals with SMA and their families. The work is not done, and the implications of finding a cure are far-reaching. With your help, we will support patients during this healing journey. Sharing these stories are critical for raising awareness, and accelerating the breakthrough work that is already being done.
Artemis Joukowsky, Director
Artemis has been involved in SMA activism and filmmaking for more than 20 years. The Cure is Artemis’ 8th documentary film, after “Defying the Nazis: The Sharps’ War” co-produced with Ken Burns, and broadcast nationally on PBS. Artemis is receiving the Sprinraza treatment in 2017.
Geralyn Dreyfous, Executive Producer
Geralyn Dreyfous is an Academy award winning filmmaker with extensive experience in consulting in the philanthropic sector. In 2007, she co-founded Impact Partners Film Fund, bringing together financiers and filmmakers so that they can create great films that entertain audiences, enrich lives, and ignite social change. Geralyn is an advising producer on this project.
Kim Brizzolara, Project Advisor
Kim Brizzolara is a feature film and documentary producer, and private investor; and serves as advisor to several non-profit organizations. She is Executive Vice Chair of the Hampton’s International Film Festival, andalso serves on the boards of Creative Visions, Blade of Grass and the Women’s Leadership Board at the Kennedy School of Government at Harvard University.
Matthew Justus, Producer
Matthew Justus, Producer of the film, is an Emmy-nominated documentary and commercial filmmaker based in San Francisco. Over the past decade, he worked on productions for HBO, PBS, the BBC, ZDF, The History Channel, IFC and film festivals around the world. He had a producer role on two projects which premiered at the Sundance Film Festival.
Cray Novick, Producer
Cray Novick recently completed his Directorial debut “Re-Evolution: The Cuban dream”, an award-winning documentary that screened to audiences internationally. He was an additional editor on Defying the Nazis. Cray is a co-producer on this project.
Erik Angra, Producer
Erik Angra is an Emmy-nominated filmmaker. Recently, Erik completed editing and cinematography for Ken Burns most recent film “Defying the Nazis”. His work has appeared on almost every major television outlet. Erik is an advising producer and cinematographer on this project.
Gareth Burghes, Producer
Gareth Burghes is a documentary filmmaker based in the New York area and received his MFA in documentary film production from Chapman University. He seeks to explore the world through documentary filmmaking and endeavors to create documentaries designed to engage people in new perspectives. From bull sharks to bakeries, his films have allowed access into the lives of people with stories to tell the world, and have gone on to screen around the world.
Now is the time to make this film — raising awareness, growing community and sharing information around treating SMA. With the Spinraza treatment, there is a model for other diseases to look at when searching for cures of their own. Telling this story has the potential to impact the lives of millions of people around the world.
Budget, Timeline & Use of Proceeds
Your contribution directly supports the making of this film! Pre-production includes research, story development, and partner outreach. Editing includes the creation of trailer, sample reels, and full-length segments. Filming includes on-set production and interviews in hospitals, homes, and research labs.
The production timeline commences immediately upon securing our initial funding and it is expected that the first rough cut will be completed in the Summer of 2018. Thanks to our non-profit partner Filmmakers Collaborative, your donation is tax-deductible.
About the Rewards
DELIVERY DATES – are all listed as November 2017, excluding rewards directly pertaining to the completed film. It is expected that many Rewards will be fulfilled much earlier.
MAKING “CHOICES” – like the size of T-shirt – is all done AFTER the campaign.
T-SHIRT and STICKER ART – we’re thinking of what art is appropriate, respectful, and makes the shirt special. If you have an idea, please tell us!
Share this Journey!
Share this link,“Like” us on Facebook, Twitter it, email this link to your friends, family, supporters, co-workers, fellow fans and anyone else.
We are here for your questions! Artemis and the team are thrilled to engage. Reach out at (SMAJourneys@gmail.com) Send a message, we’re happy to listen and respond.
Risks and challenges
The biggest challenge is distribution — at this early stage, we do not have a distributor attached yet. We are making this film ourselves and are already forming relationships with the right people and organizations to partner with us.
Artemis is an experienced filmmaker who has learned to assemble a realistic budget, scope of work, and schedule. Our team has already begun filming and is gearing up to shoot the principal footage. The funds raised here are for the first round of production. That means research, filming “before” and “during” treatment, and editing footage along the way as we develop this project into everything it can be!
THANK YOU FOR YOUR SUPPORT!
Cray NovickSEE MEMBER PROFILE