When Elisa Ramos, a 28-year-old Central Valley, California, resident with myasthenia gravis (MG), walks into a restaurant with her partner, she’s keenly aware of the looks. “I already face discrimination and displacement because of my disability,” she says. “My scars, medical equipment, and dragging feet get attention, and being with a female partner amplifies that.” . . .
At Daytona International Speedway, if you see a silver wheelchair-accessible minivan flash by outside the stadium, it’s shuttling people who need assistance getting around the expansive venue. Philip James “PJ” Nicholoff would be happy knowing that his family donated his beloved van to the speedway, and its back windows display signage honoring him. A big . . .
Jeff Shaw, program manager for MDA Let’s Play, MDA’s online gaming and streaming community, is part of a team that leads Saturday Game Nights on Twitch, celebrity streamer events for MDA, tournaments with great teams and players, and steadfast support and discussion on the MDA Let’s Play Discord server channel. Among our many great friends . . .
The Sweeneys — John, 58; his wife, Jennifer, 50; and daughters Dana, 24; Rachel, 22; and Ashley, 19 — live in a rowhouse in a small suburb outside of Philadelphia. Their street, John says, is busy — not unlike life inside the rowhouse lately. During the pandemic, the girls were living, working, and attending school . . .
Sean Baumstark was 25 when he was diagnosed with Friedrich’s ataxia, a neuromuscular disease that affects the nervous system and heart and causes muscle weakness and ataxia, a loss of balance and coordination. “During my diagnosis,” Sean says, “the geneticist started talking about support groups and encouraging that I come to grips with what I . . .
Josh Cueter, 22, from Troy, Michigan, is a 2020 graduate from Michigan State University. At school he was a board member of the MSU Adaptive Sports & Recreation Club as well as MSU’s Council of Students with Disabilities. After a semester internship with the Equal Employment Opportunity Commission in Washington, DC, Josh is currently working . . .
In March 2020, MDA asked our advocates how the novel coronavirus pandemic was impacting their lives. New Yorker Robert Paulson shared his story — and the universal truth about how neuromuscular disease (NMD), like COVID-19, creates isolation. But for those living with amyotrophic lateral sclerosis (ALS) and other forms of NMD, that isolation doesn’t always . . .
In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .
In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .
In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .
