Meet the teens and young adults who are using the power of art to show how they have been impacted by someone with ALS.
“ALS is a horrible disease that took my father when I was 12. When other kids were playing videos games and talking about sports, it was hard for me to relate. I want to use poetry to share with others how all of this affected me.”Daniel is 13 years old and lives in California with his mom and two older brothers. His father passed away from ALS in April of 2018. Daniel is collaborating with poet and writer Wendy Angulo to develop a spoken word/poetry piece.
“A few years ago I lost my fourth family member to ALS. It was hard for me to deal with so I went to see my school therapist who recommended that I start to write about what I had been going through. Shortly after, I realized that turning my writing into film was the most therapeutic way for me to share my family’s story.”Aleia has been impacted by ALS in numerous ways – her grandmother, three aunts, and an uncle passed away from ALS. Aleia, 24, lives in Georgia and decided that the most therapeutic way for her to share her story was through film. She will be partnering with filmmaker Jason Harvey to bring her idea to life.
“I didn’t really understand what ALS was when my dad got diagnosed, but now I know how sad this disease really is. Getting more involved in the ALS community has helped me cope, but I’m also looking forward to writing about what I’ve gone through and how it has affected me.”Kieran is 17 years old and lives in Minnesota with his mom and dad. After helping take care of his father who was diagnosed with ALS seven years ago, he made the decision to write about his experience. He will be collaborating with poet Wendy Angulo to develop his biographical artwork.
“My mom’s diagnosis flipped my world upside down – in both a bad and good way. Every day I wish my mom was still here, but I am thankful that it was she who brought me so many different people and opportunities. I’m proud to be sharing my story to help others who have had a loved one with ALS. Having this experience made me grow up really fast, so for all of the young people going through this, my advice is to remember that you’re still a kid, and you still have to go out and be a kid sometimes.”Mackenzie, 22, lives in Massachusetts and watched her mother struggle with ALS for almost two years. Since her mother's diagnosis, Mackenzie was inspired to make a positive impact in the ALS community. Mackenzie has been actively involved in the Boston Walk to Defeat ALS and was chosen as Hope Loves Company’s Chairwoman of the Young Ambassador Committee in 2015. In total, she has helped raise over $80,000 for ALS. She will be working with poet Wendy Angulo to bring her story to life through public speaking.
“Having a parent with ALS has been really tough on me, but I still try to be thankful for the good things I have in life. I try to remind myself to be grateful for each day and focus on the positive. I’m excited to be part of ALSO US and work to raise awareness of this disease.”Cassidy, 15, comes from New York and is an active member of her local Girl Scouts chapter. After her father was diagnosed with ALS, Cassidy made the decision to work with photographer David Plakke to help spread awareness of the disease and how it has impacted her and her family.