BLOOMFIELD, NJ - Rain didn't stop the first ever national Myastenia Gravis (MG) Walk in New Jersey at Brookdale Park last month.
MG is a rare autoimmune neuromuscular disorder that causes severe muscle weakness and can impact a person's ability to see, smile, walk, talk and breathe. In MG, the body's immune system attacks the connection between the nerves and the muscles, limiting the ability of the brain to control muscle movement. MG can be life threatening if not treated.
The Myasthenia Gravis Foundation of America (MGFA) has been hosting MG walks throughout the country for eight years with more than 40 walks a year with over $5.3 million raised. This year, because of the hard work and determination of a local woman Kelley DeVincentis, the MGFA held their first ever National Walk here in New Jersey.
“The goal of the MG Walk is to raise awareness, raise funds for ultimately a better quality of life, improved treatments and of course a cure.” said Kelley.
Kelley, who was diagnosed with MG in 1989 and is now in remission, started the first local MG Walk with the help of her family and friends in 1998. Now, after 20 years of running the local walk, the National MG Office has taken over the event and is honoring Kelley as their New Jersey MG Local Walk Hero.
“She started this walk over 20 years by going to her local community and asking for tables from her local fire department and asking the mayor for help. She took the event from one person to what it is today and that is a true hero in my eyes.” said Alayna from the national MG Office.
Kelley’s mother, who was at the MG Walk, said that she was so proud of Kelley and happy about all the donations for such a great cause.
Kelley addressed the crowd before kicking off the MG Walk and explained how the diagnosis of MG changed the entire trajectory of her life at age 16.
“I had difficulty walking, talking, I couldn’t swallow my own saliva, I couldn't hold my head up... everything was pretty much taken away from me physically” she said.
Within the first year of diagnosis, she told us that she was put on life support on three separate occasions because she was unable to breathe.
“It was such a challenge to get up and go to school, it was a challenge to take medications that altered the way I looked, it was a challenge to have a disease that no one understood what it was.”
The third time on life support she said was a horrific and awful experience. She was intubated through both her nostrils and was given last rights and her family was prepared that she might not make it.
Kelley shared that through all these challenges, one doctor provided hope with an innovative treatment at the time called Immuno Gamma Globulin (IVIG) that ultimately saved her life.
Kelley told us of another doctor who was not as hopeful. She said that this doctor bent down and whispered in her ear as she lay on life support and said, “This is it. This is what your life is going to be like." Unable to speak Kelley wrote down the word “NO” and she said that she remembers that word and experience every time she runs a 5K, as she picks up her son, and as she goes to work.
“Each time I do any achievement small or large, I think wow, I took that negativity and turned it into something positive.”
Eight years after her experience with life support and severe muscle weakness, she finally said, “I’ve had enough. I am sick and tired of trying to just get myself better, sick and tired of being embarrassed by something i have no control over," so she decided to start the first MG Walk.
“I think at the time people may have thought I was crazy”, she said. “People told me I would never get people out to walk and that there are only 70,000 Americans with MG.”
“I thought only 70,000,” she explained. “I am one of them and there are so many people here that have it and I think we are all worth it. I think we should go for the ultimate cure. That is what I want.”
“As we walk today, I celebrate not only myself but each and every one of you who are going through this journey. For the Walker who was diagnosed yesterday or for the Myasthenic who is diagnosed tomorrow. I want them to hear 'Hey you have MG, but guess what there is a cure'.”
Ramona Chavez from Paterson, who was one of the walkers with MG and diagnosed this year said that she found out about the walk through researching MG online. She said she is feeling much better since being diagnosed and starting treatment. She can eat and talk and her whole family came out to support the cause for herself and others who have MG.
The New Jersey MG Walk has already raised over $17,000 to date and donations are open until December.
Top individual fundraisers included Debora Buzinkai, Abbey Warner, Nicole Hjelm, and Jeremy Zoller.
Top Team fundraisers included Team Zippy at the top spot, Warner Walks, Hjelm's Angels and Kelley's team Every Step Counts.
"Every single dollar raised is constantly pushing us toward reaching our 2018 National goal of $900,000 and reaching the ultimate goal...a world without Myasthenia Gravis." said Alayne from the National MG Office.