Realizing that much of the current attention is focused on more widely known diseases, Multiple System Atrophy is often 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, nurture promising research and advocate for the MSA community. Staffed entirely by volunteers, Defeat MSA Alliance specifically aims to achieve a five-fold mission:
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!
DEFEAT MSA ALLIANCE
29924 JEFFERSON AVENUE, SAINT CLAIR SHORES, MICHIGAN, 48082 USA
TOLL FREE NUMBER: (855) 542-5672 (855 KICK-MSA)
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.
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.
SECRETARY, EXECUTIVE ASSISTANT, MSA UNITED COUNCIL REPRESENTATIVE
Toledo, Ohio, USA
PRESIDENT & EXECUTIVE DIRECTOR
Detroit, Michigan, USA
Grand Rapids, Michigan, USA
Clarkston, Michigan, USA
BOARD MEMBER, RESEARCH COORDINATOR
Rutgers, New Jersey, USA
FIRST PATIENT ADVOCATE
05/23/1960 – 10/16/2017
*All board members and research advisors are volunteers. Defeat MSA Alliance has no paid staff and each board member is passionately driven by their personal or family connection to the disease.
BOARD OF ADVISORS (PICTURED WITH HER GRANDSON)
Wasilla, Alaska, USA
GENERAL CHAIR, SCIENTIFIC AND MEDICAL RESEARCH ADVISORY BOARDS
Neurology, St Joseph Mercy Oakland (Trinity Health), Pontiac, Michigan, USA
Clarkston, Michigan, USA
EMERITUS VICE-PRESIDENT & MSA PATIENT ADVOCATE (PICTURED WITH HIS GRANDSON)
Lubbock, Texas, USA
Corey Whittlesey Sutton
Arnetta Steptoe, MA