It’s been a pretty lousy week for me, to say the least. What started as a ridiculously annoying cough in the middle of the first week of February eventually resulted in a trip to the emergency room the following Saturday. “Please don’t say the P-word, please don’t say…
In addition to providing a space for SMA patients, parents and caregivers to talk about their daily lives and ask each other questions, the SMA News Today forums are also designed so that the SMA community can discuss the latest news regarding research and treatments. Specifically, the research and development…
Since the launch of the SMA News Today forums, SMA patients and caregivers from all over have taken part in various discussions pertaining to life with spinal muscular atrophy. Topics that have so far been covered include acquiring assistance in college, disability and dating, using feeding tubes, having able-bodied siblings…
On Sunday, February 4, 2018, a feature-length documentary about SMA News Today columnist Alyssa Silva will air on ESPN 2. The film, Dare to be Remarkable, chronicles Silva’s life with SMA, as well as her lifelong love for the New England Patriots. Silva has been filming this documentary since…
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…
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