The first group of teenagers and young adults has been chosen to participate in Mitsubishi Tanabe Pharma America’s (MTPA) ALSO US project, designed to promote awareness of the issues young people face when a parent or other loved one is diagnosed with amyotrophic lateral sclerosis (ALS).
Participants will be assigned a mentor who will assist in development of art forms including graphic design, photography, film, and writing. Submissions, which closed in January, will be included in the upcoming ALSO US online gallery. View the project trailer here.
The first group of participants includes Massachusetts resident Mackenzie Anderson, who will craft a public speech; Aleia Kristene Asbey of Georgia, who will use screenwriting to tell her story; California resident Daniel Campbell, who will write a poem about ALS from a young person’s viewpoint; Cassidy Pierce of New York, who will use photographs to produce an awareness campaign; and Minnesota resident Kieran White, who will write a biographical essay.
”Writing empowered my voice, allowing me to connect with others through my words. It gives us the courage to speak up and tell our stories,” Wendy Angulo, a writer, poet and program mentor, said in a press release. “I’m eager to work with the ALSO US program participants and to help them find their voices so they, too, can share their stories.”
The hope is that the program encourages young people touched by ALS to use art to express themselves. It’s common for them to need help dealing with the progressive neurological disease that destroys brain and spinal cord nerve cells and causes disability. Within a few years of diagnosis, ALS patients are unable to perform everyday tasks such as climbing stairs, reaching for items, or dressing themselves.
”ALS impacts the entire family in ways that are hard to fully understand,” said Atsushi Fujimoto, MTPA president. “That’s why we felt it was so important to provide a creative outlet for teens and young adults to share their experiences. We want them to know they are not alone and be encouraged by the fact that others can learn from their experiences. We look forward to seeing their creative works in the coming months.”
Each applicant — ages 12 to 25 — was required to submit an essay describing their project idea and inspiration.
The ALSO US website includes an account from “Tess” who, as a teen, had been a caregiver for her father. “For me, one of the greatest challenges of having a parent with ALS was the difficulty of explaining the logistics of the disease — how my dad was suffering and, by default, how the family was suffering,”
”Because my dad’s symptoms changed daily, many people did not understand what was wrong with him or how they could help, especially in the early stages. It is a uniquely cruel disease that you unfortunately have to experience to truly understand.”
The project’s creative experts include filmmaker Jason Harvey, photographer David Plakke, visual artist Meet Bom5 and poet Wendy Angulo. See their profiles here.