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…
Earning money is difficult, especially when living with spinal muscular atrophy (SMA). Fortunately, there are ways to supplement your income without having to leave the house. These side jobs don’t pay much, but they’re worth checking out, especially if you find yourself with extra time on your hands.
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…
Spinraza (Nusinersen) was approved by the FDA in December 2016 for the treatment of children and adults with spinal muscular atrophy (SMA). It’s had the SMA community buzzing the world over, but as the drug becomes available in more countries, there are some common questions that keep coming up. According to…
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…
Documentary filmmaker Gareth Burghes first heard of spinal muscular atrophy (SMA) through his father’s work as a geneticist. He soon became aware of ongoing clinical trials that were studying a breakthrough drug that might change the lives of those who have the disease. As a filmmaker, Burghes knew that he wanted to…
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…
The first part of this series provides information on the seven main forum discussions on SMA News Today, as well as how to make a profile and create posts. In addition to the main forums page, there are also three groups which users can join. Two of these groups…
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