Posts By: Philip Fortier

FOR IMMEDIATE RELEASE:

Thursday, August 4, 2016

Contact: Philip Fortier, Director – Defeat MSA

Phone: (586) 246-1475

Email: DefeatMSA@gmail.com

Defeat MSA Leads Kickstarter for New Documentary About MSA!

Defeat MSA is pleased to announce the beginning of the Kickstarter campaign to support “1,000 Dias” (1,000 Days), the first full length feature film about a professional athlete confronting Multiple System Atrophy (MSA), a little known and incurable disease.

1,000 Dias (1,000 Days) 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 2016 Paralympics.

This is a story about intense perseverance and personal triumph against all the 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 single 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.  “1,000 Days” is their first documentary feature.

The filmmakers described their connection to Susana: “when we started 1,000 Days, we had no idea what was going to happen. But the best part of its 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, a neurologist and advisor for Defeat MSA, 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. The mission of Defeat MSA 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. It is befitting to announce the beginning of this Kickstarter campaign on August 4, the third anniversary of Defeat MSA’s founding date.

THANK YOU – WE HAVE SUCCESSFULLY FUNDED THIS FILM!

With 120 backers, we raised over $18,000 dollars!  Updates on the release of the film will be posted soon!  Check back with us!!

http://www.Kickstarter.com/1000Dias