Former Review employee being honored
NEW ORLEANS — Myasthenia Gravis Resource Group Founder and President Tommy Santora will be honored as the 2017 New Orleans MG Walk Hero for the 6th Annual New Orleans MG Walk, scheduled for 10 a.m. March 25 at Lafreniere Park in Metairie, according to the MG news release.
The former Daily Review sports editor and former Berwick resident is a 38-year-old patient diagnosed with MG at the age of 12. He has helped the group, since 2011, build a resourceful, networking database of more than 100 patients, neurologists, family members, friends and caretakers across Louisiana and Mississippi.
That database helps provide avenues of hope for MG patients through continuous updates and information. Previous New Orleans MG Walks have raised more than $200,000 as part of a nationwide effort to raise more than $4 million across 35 cities.
Santora also serves as communications committee chairman for the national Myasthenia Gravis Foundation of America. He was instrumental in bringing to New Orleans the National MGFA Conference that will take place March 26-28 at the Astor Crowne Plaza Hotel on Canal Street. The conference will feature seminars, presentations and professional panels centered on providing research updates, and tips on learning how to live with MG from experienced medical professionals and fellow patients.
It was back in 1991 that Santora’s journey with MG first began. While playing basketball, he felt a weakness in his legs and realized he wasn’t getting up and down the court as he normally did.
A visit to Children’s Hospital in New Orleans and neurologist Dr. Ann Tilton resulted in a diagnosed of MG. Prednisone therapy and a thymectomy proved to be very effective, putting him into remission for about 10 years.
In late 2005, following the stress caused by Hurricane Katrina, he noticed his eye lid starting to droop. While evacuated in Seattle, he saw a neurologist who confirmed that his MG had returned. Since then, his symptoms have been on and off, but he has learned to manage his MG.
In 2011 having overcome a lot of his health issues, Santora wanted to find a way to give back and help others with MG. In searching for an existing support group, he found the national MGFA, and a conversation with the CEO led him to start the first support group in New Orleans.
In 2012, Santora was approached about getting involved in the first MG Walk in New Orleans, and two years later, started serving on the board of the MGFA. He uses his 16 years of public relations, communications and journalism experience to bring media attention and awareness to MG and the MG Walk.
“Along with strong family and community support, we all have worked hard with MG patients and their families across the New Orleans area to make the walk a true awareness event and celebration with New Orleans food and culture and a great family atmosphere,” he said. “My favorite part of the walk is, after all the hard work of getting to event day, seeing the wave of families coming over the Lafreniere Park bridge to support their loved ones, and watching those in the MG community feel a great sense of hope.”
Twenty-five years later, as he reflects back on having MG as a kid and the advice he would provide to all MG patients, Santora remembers a sign hanging over his childhood bed that read, “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,” he said.
Santora, marketing director at the Baton Rouge-based Taylor Porter, and his wife Whitney now reside in Zachary.
MG can affect all ages, races and genders, and as many as 100,000 in the U.S. are believed to have this rare chronic, autoimmune, neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups, affecting the muscles that control eye movements, eyelids, chewing, swallowing, breathing, coughing and facial expression, as well as the arms and legs.
For more information online visit www.myasthenia.org or the MG Walk website at www.MGWalk.org.