My name is Tommy Santora, president/founder of the New Orleans Myasthenia Gravis Support Group, and it is my sincere honor to invite you to participate in our 7th Annual New Orleans MG Walk, to be held Saturday, March 3, 2018, at Lafreniere Park in Metairie, beginning at 10 a.m.
I have had MG for 26 years since the age of 12. After 20 years of letting MG beat me and knock me down repeatedly and experiencing every symptom imaginable and taking every medication possibly ever prescribed or recommended for this neuromuscular disease, in 2011, I fought back, and started the New Orleans MG Support Group and also our local Walk. And in the last six years, we have raised more than $200,000 in MG research funds, built tons of awareness across the New Orleans community, and developed a database of more than 100 patients, neurologists, family members, friends and caretakers across Louisiana and Mississippi.
The MG patients I have met through this journey have completely impacted my life and touched my heart. God has helped steer me to be healthy enough to be able to give back to fellow MG patients, and watching the strength and courage of our support group members and MG patients across our country fight daily battles against this disease motivates the hell out of me every day to fight for awareness and for research funds to one day find a cure.
No matter what We Never Give Up. With this unpredictable disease, there will be bad days, but there will also be good days. And you just have to get up every morning and keep fighting the battle, using the support system of your loved ones, to get you through anything.