Mitsubishi Tanabe Pharma is looking for ALS stories. Not patient stories, but rather the stories—and art and video creations—of teens whose parents or family members have ALS. Last week, it launched ALSO US, an online effort asking young people who have a family member with ALS to submit original artwork, videos or stories at its website.
Of the 5,000 to 6,000 people diagnosed with ALS every year, many have children, and teens especially take active roles in caretaking for afflicted parents. However, they’re also often overlooked in the fulfillment of the needs of patient as well as the needs of the main adult caregiver.
“ALS impacts the whole family. It doesn’t just affect the person with the disease. Teens and young adults are impacted in a variety of ways. We wanted to create a program to raise awareness about the fact that teenage and young adult family members are impacted,” Atsushi Fujimoto, president of Mitsubishi Tanabe Pharma America, said in an email interview.
Young contributors ages 12 to 25 have until Jan. 22 to submit either original artwork or an application to work with an artist as a mentor in creating a piece of work. Four people will be chosen to work with experts in photography, graphic design, poetry and documentary film. Original works and the co-created projects will be displayed online at the website, and Mitsubishi Tanabe is “exploring additional platforms or venues to potentially showcase the artwork in the future.”
Tess Cohen knows a lot about teens and ALS. She was a teen when her father Arthur Cohen, a photographer, was diagnosed with ALS. She made a movie about her experiences with him called “Tess & Arty” that showed her helping him with everyday tasks and just spending time together. He died last year after four years with ALS. Tess was 22.
“When caring for a parent with ALS, the expected child/adult roles are quickly reversed. When I was little my family would make fun at how small my dad would cut up my food for me because he was scared I would choke. It was surreal when I was cutting his food up for him into tiny pieces just years later. While I didn't know it at the time, filming this documentary on my dad was a way to immortalize his spirit,” she said, telling her story on the ALSO US website.
Mitsubishi Tanabe makes Radicava, the first new FDA-approved treatment for ALS in decades. The infused drug, which has been on the market for a little over a year, slows the decline of physical functions for ALS patients. As of September, Radicava was being used to treat about 3,190 people in the U.S.