– ABOUT THE FILM:

In 2016-2017, DEFEAT MSA ALLIANCE (USA) led a global kickstarter campaign to support “A Day for Susana” (formerly called “1,000 Days”), the first full length feature film about someone confronting Multiple System Atrophy (MSA), a little known and incurable disease, in this case, a Brazilian world champion athlete. “A Day for Susana” is a documentary about Susana Schnarndorf, a 48 year old Brazilian triathlete and 6 time Ironman winner, living with MSA who continues to battle this rare and rapidly degenerative disease, while training for the Paralympics. This is a story about intense perseverance and personal triumph against all odds. It is the story of one woman’s journey, a countdown of 1,000 days in the run-up to the 2016 Paralympics in Rio de Janeiro, Brazil. In the film, we witness the daily struggle and professional challenge of a world athlete and current Paralympic competitor.

Every hour, every single day, Susana must face the marathon of her life, to contend with a disabling disease so radical, it affects every bodily system. Yet Susana continues to train, to embrace strength despite a relentless illness and thus, to defy everyone’s expectations. Susana vows to fight, to choose happiness over despair, personal triumph over defeat. After being diagnosed, Susana explained her personal philosophy, “I’m not healthy anymore, but I found peace after losing everything. Before it all, I was just paying attention to what I didn’t have; now, I just focus on what I do have. I am now conscious that unhappiness is a choice, people choose to be unhappy. I choose happiness.” (Susana Schnarndorf, 2014.)

In 2015, the film’s directors Giovanna Giovanini and Rodrigo Boecker, from ClubSoda Films were recognized by the Tribeca Film Institute, as one of 10 recipients of the Latin American Fund presented by Bloomberg. Giovanna has worked in broadcast and cable TV production and her husband, Rodrigo is a sound designer and recordist. Rodrigo has also worked as a music producer. This film “1,000 Days” is their first documentary feature.

The filmmakers described their connection to Susana: “when we started the film, we had no idea what was going to happen. But the best part of the unpredictability was to get to know Susana closer. She is such a character; she is always in a good mood, making jokes and seeing the bright side of life. That changed our lives forever.”

Dr. Pratik Bhattacharya, DEFEAT MSA ALLIANCE Co-Director and Research Advisory Board Member, spoke about the dire need for further public awareness and education among medical professionals. “Earlier diagnosis of MSA begins with greater public awareness and expanded medical education. This film will be a important contribution toward achieving those ends.”

MSA is a rare, rapidly progressing neurodegenerative disorder. It impairs the systems that regulate blood pressure, heart rate and the bladder – many of the basic functions that people take for granted every day. Patients with advanced MSA often become bedridden, unable to speak and completely paralyzed. At present, there is no cure, no genetic tests and very few treatments. Patients are confronted with a dim prognosis and left with few options. In 2020, DEFEAT MSA ALLIANCE formed a new alliance of five indpendent charities: Defeat MSA Alliance (USA), Defeat Multiple System Atrophy Canada/Vaincre L’Atrophie Multisystématisée Canada, Defeat MSA Awareness Shoe, Defeat MSA Italy (Combattiamo l’Atrofia Multisistemica) and Defeat Multiple System Atrophy Australia and New Zealand. The mission of all Defeat MSA allied charities is to support patients and their caregivers, to help fund research into promising therapies, to inform the public and to raise awareness about living with Multiple System Atrophy.

With 120 individual backers, DEFEAT MSA ALLIANCE (USA) raised over $18,000 to complete “Susana”!  As of 2020, the film has appeared in numerous film festivals, including showings in Brazil, Austria, Panama, Mexico, Cuba and Poland. The film also opened in 2019 at the prestigous Atlanta Film Festival in the United States.

DEFEAT MSA ALLIANCE is seeking your help to bring this film to your town or city! If you are connected to the MSA community and would like to help organize an event to show this film in your area, please contact us: info@defeatmsa.org.nz

DEFEAT MSA ALLIANCE (USA) invites all concerned charity partners, especially our fellow MSA and Parkinson’s charities, to help us share this film with our communities. Let’s bring this amazing film to your university or town!

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