Vance Robinson was diagnosed with inclusion body myositis over ten years ago, and since then he has worked to raise money and awareness. Pre-pandemic, Vance would throw the first pitch out at college baseball games to bring attention to his rare disease. Because COVID-19 has stopped large crowds from gathering, he had to think of a different way to advocate.
Vance’s Advocacy
Because he can no longer address a large crowd, Vance has turned to social media. His plan is to wear a hat and jersey from a different college baseball team and post a picture for the entirety of May, which is Inclusion Body Myositis Awareness Month. Teams throughout the country will participate; ten have already signed on.
Vance says that raising awareness and money for rare disease research keeps him busy and positive. Along the way, he gets to meet new people and make friends. He stated, “One thing that it hasn’t taken away is my attitude. I’m a pretty upbeat, positive guy.”
When the pandemic allows, Vance will return to the baseball field and throw out first pitches up and down the West Coast. You can donate to his cause here.
About Inclusion Body Myositis
Inclusion body myositis (IBM) is a progressive disorder that impacts the muscles, characterized by inflammation, atrophy, and feebleness. It typically impacts adults when they reach 50. Affected individuals will experience myalgia, rimmed vacuoles, tripping and falling, muscle weakness and atrophy, ragged-red muscle fibers, elevated serum creatine phosphokinase, and feeding difficulties in infants. The thighs, fingers, and wrists are the most heavily affected. Medical professionals are unsure as to what causes these symptoms, although they suspect that there are environmental, genetic, and immune-related factors. They do not think that it is hereditary, although one may be genetically predisposed. In terms of treatment, there is no cure. It is symptomatic. Affected individuals typically require occupational or physical therapy, walking aids, or other devices to aid with movement.
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