In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 14th profile in that series.

“I raise my voice for the people who can’t. Someone I love was affected by ALS, so it affected me as well. I say what I [feel] the people who lost their communication abilities would want to be said,” 13-year-old Sophie Rubin said.

Sophie is a seventh-grader in Maryland. She has an older sister, Lucy, who is 16 years old and a dog named Rosie. She is a competitive dancer and English is her favorite subject. And she loves her grandmother, “Nanny,” very, very much.

Nanny, who Sophie describes as “the best,” passed away in March – 14 months after being diagnosed with ALS. In Nanny’s honor and memory, Sophie has raised more than $10,000 through her “Nanny’s Nation” One Dollar Difference campaign for The ALS Association DC/MD/VA Chapter and said this year’s ALS Awareness Month theme of “Raise Your Voice” sums up her last seven months.

“I have worked so hard to raise ALS awareness and I think I did a pretty good job,” Sophie said. “I have been raising my voice by telling people about my project. I have posted about it on Instagram and Snapchat. I have made posters and sold bracelets at dance competitions. I have spoken out about this disease and it definitely paid off because I raised over $10,000. That means that we are $10,000 closer to finding a cure.”

Making It Happen

Nanny and Sophie lived in the same neighborhood when Sophie was very young. The two would walk their dogs together and Sophie would often sleep at Nanny’s house.

“I liked helping [Nanny] in the kitchen,” Sophie said. “For my eighth birthday, my parents, sister, Nanny, and I all went to Disney World, and we celebrated her birthday when we were there, too.”

“I remember [Nanny] was getting weaker for about a year before she was diagnosed on my twelfth birthday in early 2017,” Sophie continued. “I was inspired [to start Nanny’s Nation] because I was really upset watching [Nanny] slowly get more and more sick. I decided that I’d do everything that I could to try and help my Nanny, as well as everyone who has ALS. My family friend, [Tennessee Titan] Tim Shaw, also has ALS and he’s living his life to the fullest, so that’s really inspiring.”

It took Sophie about two months to come up with her final plan for Nanny’s Nation. She would sell bracelets for $1 and the money would go toward care services, research, and advocacy at The ALS Association.

“Once I decided what I was going to do, I made it happen,” she explained. “I bought 1,000 rubber bracelets for [about] $300 with my own money. I said my goal was to make $1,000. I didn’t give up. It took a long time to reach $1,000. But when I did, I knew that I wasn’t going to stop raising money and awareness. I said, ‘I will hit $10,000 before my grandma dies.’”

“Saying something and doing something are so different,” she continued. “One makes a difference and one doesn’t. Benjamin Franklin once said, ‘Well done is better than well said.’ And I couldn’t agree more.”

Sophie knows too well how hard it is to watch “someone who you love with your entire heart” getting sicker each day. “After we came home from visiting [Nanny] in assisted living, I would cry,” she said. “ALS is hard. There isn’t much knowledge about it.”

Working Harder

To those who have ALS, Sophie said, “I know it’s hard and scary, but things are looking up. So many people are just like me and raising money.”

To the people who love someone living with ALS, she said, “They still love you so much. Don’t think they can’t understand you. Keep talking to them. Tell them about your day. Tell them you love them. Be there with them.”

About two weeks after Nanny died, Sophie crossed the $10,000 mark. “I realized that I did that,” she said.

Nanny is missed a lot, especially by Sophie. Losing Nanny to ALS, she said, has inspired her to work even harder. She wants to see a cure for ALS in her lifetime, and the sooner, the better.

Won’t you Raise Your Voice with Sophie and The ALS Association as we increase awareness and fight for a world without ALS?

Contact your representatives in Congress. Recruit your friends to like our Facebook page or follow us on Twitter. Promote a fundraiser. Host a fundraiser. Register for a Walk to Defeat ALS or a Team Challenge ALS event.

Raise Your Voice however you can. Together, we will be heard.