The Eighth Annual New Orleans Myasthenia Gravis (MG) Walk will take place on April 6 at Lafreniere Park in New Orleans. The event raises awareness and research funds for finding a cure for the neuromuscular disease. Each year, the fundraiser attracts more than 300 people. In the previous seven years, the New Orleans MG Walk has raised more than $300,000 for awareness efforts and research, and nationally, the walks have raised more than $6 million.
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. Also, there are five new treatments for MG in Phase 2 clinical trials. The MGFA is working closely with these companies, assisting in trial design and recruitment. 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, chair of the MGFA Communications Committee, and a 40-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.”
The walk consists of one-mile or three-mile options around the lagoon in Lafreniere Park, starting at the pavilion shelter. Donations are accepted at the walk, and proceeds are committed to finding a cure for MG, improving treatment options and providing information and support through research, education, community programs, and advocacy through the national MGFA office.
There will be entertainment, food, including jambalaya, hot dogs, fruit, snacks, water, soft drinks, and a DJ for the event.
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 successfully hosted the MGFA National Conference in 2017 in which more than 225 attendees visited New Orleans, making it the largest conference ever for the MGFA.
MG can affect all ages, races, and genders, and more than 100,000 nationally are diagnosed with the chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups and can affect muscles that control eye movements, eyelids, chewing, swallowing, breathing, coughing, and facial expression, as well as, the arms and legs.
For more information on the New Orleans Myasthenia Gravis Walk or to register click here.