The 9th Annual New Orleans Myasthenia Gravis Walk will take place on March 14 at Lafreniere Park. New Orleans is one of more than 35 cities nationwide to help raise awareness of and research funds for finding a cure for the neuromuscular disease. Each year, the fundraiser attracts more than 300 people. In the previous eight years, the New Orleans MG Walk has raised more than $350,000 for awareness efforts and research, and nationally, the Walks have raised more than $7 million.
For more information on the walk, visit https://www.mgwalk.org/2020-la-new-orleans-mg-walk/
The MGFA funded early research that helped lead to the first approved therapy for MG in 60 years as Alexion Pharmaceuticals announced FDA approval for Soliris® (eculizumab). This is the first treatment approved for MG since Mestinon in 1955, and the first disease modifying therapy ever approved as a targeted medication for people with MG. In 2019, the MGFA funded close to $1 million in seven different research projects to study new pathways to treatment and understanding of MG. The MGFA also worked with scientists at Duke and Harvard in applying to the Patient Centered Outcomes Research Institute for a landmark study to understand treatment efficacy in MG, resulting in a $2.5 million award.
“The goal of more choices in medications and treatments for MG is within reach, and we are making significant strides in research,” said Tommy Santora, president of the MGFA New Orleans Support Group, and a 41-year-old patient who has had MG since the age of 12. “That’s why the continuation of these Walks are so beneficial across the country because we are raising crucial research dollars, and improving the scope and outreach of our MG community and support system. Our patients know now more than ever before that they are not alone, and there is significant work being done to help them.”
Since 2011, the New Orleans MG Support Group has built a resourceful, networking database of more than 100 patients, neurologists, family members, friends, and caretakers, across Louisiana and Mississippi, to provide avenues of hope for MG patients through continuous updates and information. The Group hosted the MGFA National Conference in 2017 during which more than 225 attendees visited New Orleans, making it the largest conference ever for the MGFA.