Ben Lou is a 17-year-old from San Diego who is fluent in both English and Chinese. He is a math whiz and fascinated by science. Ben also has had total body weakness from birth and, at the age of 1 year, was diagnosed with spinal muscular atrophy (SMA). His experience, like many others, led to various health issues. Ben had four major surgeries before his 11th birthday. His mother, Jenny, recalls a moment after his most recent surgery in 2013, when “Ben kept singing ‘shoot me down / but I won’t fall / I am Titanium!’ That’s Ben. He is Titanium! It became his theme song.” Ben continues to stay motivated and focused on his goals.

Despite all these challenges, Ben is as active as any kid his age. SMA hasn’t stopped Ben from traveling and participating in math competitions all around the world. He was 10 years old when he went to Beijing to compete at the World Math Team Championship, where he won the only Gold medal awarded to the USA Junior Team. Jenny remembers that during the award ceremony he made a speech where he called for better inclusion education for SMA children and better access for the wheelchair users. Not only did Ben participate in multiple elite math competitions, he also did two national physics competitions this year, ranking in the top 100.

During the recent global pandemic, Ben hasn’t slowed down. He celebrated his birthday with a “nature bounty” theme party with his family. “Although it is sad not having friends come over to celebrate, I had fun watching a movie with my sister and feasting on lots of delicious foods”, said Ben. “We had vegetarian dishes with a variety of exotic fruits, such as cherimoya and star fruits!” He also started a birthday fundraiser on Facebook, supporting Cure SMA.

Ben is thankful to have his family during these tough times. “I stay connected to others via phone and Zoom calls,” he said. Ben is continuing his extracurriculars activities, and even “played professor” during quarantine. “I taught a math class on invariants and monovariants in March to high schoolers in The San Diego Math Circle, and I plan to teach another class on Counting Lattice Paths in April.” Ben continued, “I also like playing board games, like Cribbage and Checkers, with a friend through Tabletopia.com.” Ben is homeschooled, so quarantine hasn’t affected his schooling much, but some of his extracurriculars, like math camp, have gone virtual! “It makes it easier for me to attend, since transportation is difficult for me,” Ben said.

In a previous Community Spotlight, we talked about how Ben has teamed up with his good friend, Dana Perrella, to raise money for Cookies4SMA. Her fundraising organization, Cookies4Cures, is partnering with Cure SMA to raise $50,000 for SMA research in 2020. You can help in this cause by donating online via her GoFundMe page, which talks about their amazing bond. Ben is excited to be helping to raise funds for Cure SMA because he believes that “they are leading the way to a world without SMA. I believe a cure is possible, and I know that one is necessary.”