After hosting the largest ever MGFA National Conference in 2017, New Orleans was back in the spotlight again with the 7th Annual New Orleans Myasthenia Gravis Walk officially kicking off the 2018 National MG Walk tour, visiting more than 35 cities nationwide to raise awareness and research funds for finding a cure for the neuromuscular disease.
The 7th Annual New Orleans MG Walk (www.mgwalk.org/neworleans) took place on March 3 at 10 a.m. at Lafreniere Park in Metairie. In the previous six years, the New Orleans MG Walk has raised more than $250,000 for awareness efforts and research, and nationally, the walks have raised more than $5 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 39-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 7th Annual New Orleans MG Walk consisted of one mile or three mile options around the lagoon in Lafreniere Park, starting at the pavilion shelter. Donations were 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.
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. The conference was preceded by the 6th Annual New Orleans MG Walk, which had 300 attendees and raised $40,000.
MG can affect all ages, races, and genders. More than 100,000 people across the nation have been diagnosed with the chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The disease can affect muscles that control eye movements, eyelids, chewing, swallowing, breathing, coughing, and facial expression, as well as the arms and legs.