Kevan Chandler, founder of the nonprofit organization We Carry Kevan, made national headlines in 2016 when some of his closest friends carried him on a specialized backpack across Europe. Chandler has SMA type 2, and since returning from his Europe expedition he’s written a book about the experience and helped…
While spinal muscular atrophy is strictly a physical condition, it can still take a mental and emotional toll on those who have it. Between having to be dependent on others for physical needs, feeling like a burden as a result, and constantly being reminded of the things you…
Danyelle Sun is the mother of two children with SMA, and is also a spokesperson within the SMA community. In 2017, she took part in the Patient Focused Drug Development conference in Maryland, which was organized by Cure SMA and the Food and Drug Administration. SMA News Today caught up…
In the latest episode of the SMA News Today podcast, Dr. Danielle Sheypuk shares her perspective on the topic of disability and dating. Sheypuk is a clinical psychologist with SMA, and in her work she strives to change negative stereotypes about individuals with disabilities. Originally from Scranton, Pennsylvania, Sheypuk has…
The upcoming film “Don’t Worry, He Won’t Get Far on Foot” by director Gus Van Sant and starring Joaquin Phoenix is already stirring up controversy in many disabled communities. Depicting the life of the late quadriplegic cartoonist John Callahan, the film is just one of many movies…
Bluetooth technology is a helpful tool in the modern world for anyone who uses a smartphone, tablet or computer on a regular basis. Connecting one of these devices to a Bluetooth can maximize efficiency, especially if you’re on the go and are trying to respond to texts, emails and phone…
In 2013, Collin Pollock decided to combine his living with SMA with his lifelong passion for barbecue. Pollock’s business WheelyQ Barbecue Sauces & Rubs not only produces authentic and original sauces, but a portion of the company’s profits go directly towards SMA research. Pollock runs the business from his home…
I’m often told by friends that I’m a pretty chill, go-with-the-flow kind of guy. In my podcast group, I’m the peacekeeper, if and when a dispute ensues among my co-hosts. When I was on the editorial staff of North Carolina State’s student newspaper, I was the guy who…
Melissa Milinovich is a regular speaker at SMA conferences and uses her social media platforms to educate others about life with SMA. Over the past year, she’s been chronicling her Spinraza journey on her YouTube channel, as well as on Facebook and Twitter. She lives in Amelia, Ohio with her…
If and when the subject of disability and dating arises in popular media, it tends to be oversimplified and filled with gross sentimentality. Films such as the 2016 romantic drama Me Before You, which is based on the novel of the same name, portray the disabled character as a person…
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