OUR
MISSION

Realizing that much of the current attention is focused on more widely known diseases, Multiple System Atrophy is overlooked. MSA patients are confronted with a dim prognosis and left with few options. Defeat MSA Alliance is an inclusive US based 501(c)(3) charity that aspires to balance efforts to support patients, educate medical professionals, raise public awareness and nurture promising research. Staffed entirely by volunteers, Defeat MSA Alliance aims to achieve a four-fold mission:

To build a community that truly serves those that suffer from MSA.
To cultivate promising research into treatments and slowing MSA.
To advocate for more education of health professionals about MSA.
To raise greater public awareness about living with MSA.

Defeat MSA Alliance invites all other like-minded individuals, around the world, to join us in this noble fight: to speak for those who cannot, with one mind, one heart and one voice: to defeat MSA forever!

AWARENESS. ALLEVIATION. ADVANCEMENT.

JOE’S STORY

Joe Fortier (8/4/1956 – 1/21/2013)

Joe Fortier (August 4, 1956 – January 21, 2013) was the son of the late Callista M. Fortier and the late Charles M. Fortier. He attended Catholic schools in Detroit and graduated from the University of Detroit Jesuit High School in 1975. In his early life Joe was a strong swimmer, lifeguard, and scuba diver. Until the onset of his illness, which was later diagnosed as Multiple System Atrophy (MSA), Joe led an active and adventurous life.

After high school graduation, Joe began his life’s work in the field of sleep medicine. Early on, he attended college at the University of Detroit and Wayne State University. He held positions at Henry Ford Hospital in Sleep Disorders and at the VA Medical Center, both in Detroit. For more than 25 years Joe managed sleep clinics, consulted on important research (now oftentimes cited by others), contributed to publications and helped establish other sleep research clinics throughout Michigan.

Joe was a strong and loving family man who had a quick wit and great sense of humor. He was an avid reader of novels, current events, history, health fields, marine biology and international affairs. Active in local politics, Joe always had in his mind what would best help everyday people build a better life. He was committed to the philosophy that the use of one’s personal and professional skills in helping others was the best thing anyone could do and this he did, in his own life.

In late 2009, Joe was diagnosed with Multiple System Atrophy (MSA). He suffered from this terrible disease for three years, handling the many challenges of what was to become a rapidly progressive neurodegeneration with honor and dignity. In January of 2013, at only 56 years of age, Joe passed away.

His wish for the charity named in his honor, the Defeat MSA Joseph G. Fortier Foundation and now what has become Defeat MSA Alliance was to carry out what he demonstrated in his own life – to advance medical research to help others, this time to help others who suffer with the same affliction he endured. Joe’s life did not include great deeds or famous achievements, but his life did demonstrate a simple desire to do his best to help others. We, at Defeat MSA Alliance, hope to do our part to continue this mission.

OUR
APPROACH

OUR PROMISE

We promise to work towards raising awareness within the medical profession and in society about Multiple System Atrophy and the everyday challenges faced by people living with it. We promise to help create a network of support for patients living with Multiple System Atrophy and their caregivers. We promise to foster a free and open dialogue that serves to advance scientific research. We promise to conduct our activities with the highest of professional ethics, organizational integrity and financial transparency. With confidence, and together with other like-minded charities, we will build a coalition of patients, caregivers, researchers, donors and policy-makers in an effort to pursue our common cause – to win the battle and forever defeat Multiple System Atrophy.

#KICKMSA #DefeatMSA #MSA #MSAawareness #WeRememberMSA #MSAAngels

BOARD OF
DIRECTORS

Patricia Boylan
Secretary of Board, Executive Assistant

Toledo, Ohio, USA

Philip M. Fortier, MA
President & Executive Director

University of Detroit Mercy Detroit, Michigan

Elena Fracassa, MA
Board Member

Detroit, Michigan

Margaret MacLachlan, MA, CCC-SLP
Board Member

Grand Rapids, Michigan, USA

John Scharfenkamp, MA, LLP
Board Member

Clarkston, Michigan, USA

Mary Jane Scharfenkamp
Board Member

Clarkston, Michigan, USA

Michael Smith
Vice-President Pro-tem & MSA Patient Advocate (Pictured with his grandson)

Lubbock, Texas, USA

Arnetta M. Stepoe
Support Advisor & President Pro-tem

Menifee, California, USA

Pam Smith Howells
MSA Caregiver Advocate, Board Member (pictured with her grandson)

Wasilla, Alaska, USA

Corey Whittlesey-Sutton
Board Member, Fundraiser Advisor (Pictured with her mom Carolyn -RIP)

Holly, Michigan, USA

Sandra Bettenhausen

Board Member

Raleigh, North Carolina, USA

BOARD MEMORIALS

*All board members and research advisors are volunteers. Defeat MSA Alliance has no paid staff or contracted employees and each board member is passionately driven by their personal or family connection to the disease.

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