Jose “Tony” Galvez, 25, is a dedicated and passionate patient advocate for Muscular Dystrophy (MD). “Everything I do is motivated by helping others,” Tony explains.
Diagnosed with MD at age seven, Tony learned to channel the frustration for his diagnosis into advocacy work.
Today, Tony is an active member of the Muscular Dystrophy Association (MDA) and has raised more than $20,000 for MD research, free clinic services, equipment loan programs, summer camps, and more.
Living with MD
Tony’s laugh is contagious—and one of the many reasons Tony’s nieces and nephews (eight total!) find him irresistible.
Tony with three of his nieces (left to right), Natalie, 4, Eliana, six months, and Angelica, 8.
“They are my little helpers,” Tony says of his three nieces, Angelica, 8, Natalie, 4, and Eliana, six months.
Tony’s life hasn’t always been this way. At age 11, Tony lost the ability to walk and he remembers, “School was hard—kids made fun of me.” During his teenage years, he struggled to accept his disease and find his place in the world.
At 16, Tony required major surgery to straighten his spine in order to maintain his lung function. He remembers back to the day of his surgery, “Deep inside, I didn’t think I’d make it. I was scared.”
From the moment Tony survived the surgery, he knew he needed to make a change. He began to open up to his family and overcame his anxiety and depression.
Choosing a New Path
Over the next few years, Tony learned a powerful life lesson—he had control over his own happiness.
Tony graduated from high school and eventually went on to college for Executive Accounting. During his first semester of college, he suffered a severe bout of pneumonia and was hospitalized. Tony’s dream of graduating college slowly started to unravel.
Instead of losing hope, Tony chose a new path. He became a patient advocate for MD.
“I took a risk, and it’s what keeps me going,” he proudly states.
Advocating for Others
Today, Tony is one of Independence Plus’ Respiratory Home Medical Equipment patients. He is on bi-level non-invasive ventilation, which provides ventilatory support without an artificial airway (i.e. no tracheostomy tube).
“I like it better,” Tony says. Tony now has the independence he needs to network with sponsors and organize two annual MDA events—a car show and a dance.
The third annual MDA benefit dance is next Saturday, March 15, 2014—and Tony is hoping it will be his biggest event yet. With seven bands scheduled to appear and local sponsors contributing almost $4,000, Tony is planning to sell out his 600 tickets. And that is one more reason Tony will be a happy man!
Marketing material promoting the benefit dance on Saturday, March 15
For more information about the event, click here.