At the American Academy of Neurology (ANN) Annual Meeting, we talked with Philip Fortier, executive director of Defeat SMA USA, Defeat SMA Canada, and the MSA Awareness Shoe.
Multiple System Atrophy (MSA) is a rare, neurodegenerative disorder that largely affects the autonomic nervous system. In addition to causing problems with blood pressure, respiration, and bladder control, most patients have Parkinson’s disease like symptoms (ataxia, tremor, rigidity). There is currently no effective treatment for this condition.
The inspiration for starting Defeat MSA was Philip’s brother, George Fortier, who died as a result of the disease in 2013.
Fortier said when his brother developed the condition, there was very little awareness about MSA, outside of a few specialized neurologists. “About a year before he (joe) died we started Defeat MSA and it's grown to a sizable charity. Our 4 pillars are: 1) medical research; 2) public awareness; 3) patient support; and 4) advocacy.”
In addition to Defeat MSA USA and Defeat MSA Canada, Fortier is involved in a public awareness campaign called the MSA Awareness Shoe.
The ‘shoe’ has travelled the world promoting awareness about MSA and provided support and inspiration for those afflicted with the disease. Among the people who have taken photos with the shoe are singer Vince Neil (of Motley Crue) and actor Benicio Del Toro.
To be 1 of the 20,000+ social media followers that the shoe currently has, go to Facebook Twitter, or Instagram.
16 окт 2024
