Posts By: Philip Fortier


Posted on January 25, 2019 by - Uncategorized

Jesuit Schools Host the MSA Awareness Shoe!

In keeping with the Jesuit philosophy to advocate for people who are most vulnerable, the Jesuit schools unite with other institutions across the United States and the world – to help raise awareness about Multiple System Atrophy by hosting the MSA Awareness Shoe. We remember all those that have died due to MSA and we pray for them and their families.

Here are a few snapshots of the MSA Awareness Shoe’s visits to Jesuit sponsored institutions in the recent past:

Georgetown graduate students currently working on new MSA related research host the MSA Awareness Shoe in their lab at Georgetown’s School of Medicine.

The Shoe stops for a rest in front of Healy Hall at Georgetown University.

The Jesuits prayed for all those with MSA…

The MSA Awareness Shoe stops to honor all those graduates of Jesuit schools that have succumbed to Multiple System Atrophy (RIP).

At home with everyone who cares about those who suffer from Multiple System Atrophy – Georgetown research students.

Oops, let’s not stay here too long – ACID!

Stopped to pray outside Healy Hall at Georgetown University. The building was named for Patrick John Healy, S.J., the first African- American to become a Jesuit priest and the president of Georgetown following the American Civil War. Father Healy, please intercede for all those who suffer from MSA!

Oh, look what we have here!

Awaiting business class to begin at University of Detroit Mercy!

Impressive seal at Georgetown!

Ahhhh, time for a rest!

Jesus, we trust in you! – Help All Those with MSA!

In Good Company – The UDM Titans!

Always the Life of the Party! With Residents and Physicians at the Med School

Now, how do I get down from here! With the UDM Titans!

The Philosophers at St Joe – Happy to Pose with the Globetrotting MSA Shoe! – Philadelphia’s Jesuit University.

At the foot of the cross, we pray for an end to MSA!

Father Kevin O’Brien, SJ VP of Mission, Georgetown University

Saint Ignatius of Loyola – Please Intercede for All Those with MSA! – VP of Mission at UDM, Father John Staudenmaier, S.J.

Father Justin J Kelly, S.J. and the MSA Shoe at the Jesuit Community Chapel at UDM.

With Father Kevin Gillepsie, S.J. – President of Saint Joseph’s University in Philadelphia.

At the Holy Water Font, Loyola Chapel, Georgetown

At the foot of Bishop John Carroll, first bishop of the United States…

Have Suitcase, Will Travel! Where next? — USF? SLU? Regis? Seattle University?

Inaugural Art and MSA Exhibit: “Painting with MSA” By Rey Umali

Posted on August 10, 2017 by - Uncategorized


Major Art Opening in St Louis

“Painting with MSA” – The Art of Rey Umali

Please join us at Saint Louis’  MAD ART GALLERY  on September 1, 7pm-10pm (CST)!

Please help a good cause while enjoying a wonderful evening of art and camaraderie!

See Rey Umali’s Art Exhibit Preview –

MadArt is at 2727 S 12th St, St Louis, MO 63118

MSA Shoe Co-Sponsor Defeat MSA Leads Kickstarter for New Documentary About MSA!

Posted on August 4, 2016 by - MSA News


Thursday, August 4, 2016

Contact: Philip Fortier, Director – Defeat MSA

Phone: (586) 246-1475


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.


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

MSA Shoe Launches Photo Collage with MSA Patients on Facebook!

Posted on March 21, 2015 by - Uncategorized

Working off the viral internet sensation about the color of the dress, the MSA Shoe posts a collage with MSA patients – illustrating how important the fight against MSA is compared to such trivial happenings today!

So far, the photo collage has had a remarkable impact.  It has already been seen by 30,000 people and shared by 278 people!  Let’s Keep The Shoe Moving for MSA!



Our Shoe Announces Donor Gifts – KICK MSA TEES!

Posted on March 21, 2015 by - Uncategorized

Please see the donate page for a choice of three kinds of KICK MSA t-shirts!  And now, donations can be made directly on our site, efficient and secure!  No PayPal Required!! Please visit the donate page and get your FREE t-shirt!

Together, we can and WILL DEFEAT MSA!


New Angels

Posted on March 21, 2015 by - Uncategorized

Please read about the courageous lives of those who have passed away due to MSA in our recent posts on the MSA Angels page:  Jim Martindale, Dennis Ray Jakeway, Rick Stevens, Randall Sudduth and Racine Burton Phillips.

Together with the help of our angels, we can and will DEFEAT MSA!

Philip Fortier

Director, Defeat MSA Awareness Shoe

New Angels

Posted on November 28, 2014 by - MSA Angels

In Memory of:

Jillian Keenan, Eric Sutton, Alvin Miller, Richard Ruth, Kathy Shih, Joe Fortier and Geoff Aitken.  Please see our beloved Angels page.

If you want to request your angel to be posted, please email the MSA Shoe site administrator:

The following items will be needed:          

~  name of the angel, dates of birth and death, photo of the angel, short biographical profile and a memorial phrase to place under the angel (see examples already posted)

Together, We Will Defeat MSA!

Philip Fortier, MSA Shoe Administrator