I’ve used this space to share little snippets about the nonprofit organization I founded 18 years ago. I’ve shared who was my inspiration behind this foundation and how it all began with one little lemonade stand. Today, I’ll talk about what this organization stands for, and the…
Alyssa Silva was 8 years old when she set up a lemonade stand one summer day and saved the proceeds to benefit spinal muscular atrophy, which she had been diagnosed with at 5 months old. Although modest, her lemonade sales set the tone for years to come – she had been bitten by the fundraising bug. Now, at age 26, Silva’s nonprofit business WOW (Working on Walking) is holding a major fundraiser on Saturday, Aug. 26, in Providence, Rhode Island. This gala is different than the others and especially dear to Silva. It celebrates the first year that Biogen’s Spinraza, the first approved treatment for SMA, has been on the market. Spinraza was authorized in December 2016, which is when Silva began treatment. At the time she was in the middle of a clinical trial and the commercialization of the new drug. Biogen is the major sponsor of Saturday’s gala. “It’s a brand-new event this year. It’s both terrifying and exciting at the same time,” said Silva, who lives in nearby Cumberland with her parents. She said 100 percent of the proceeds will benefit SMA. They will be split between Cure SMA and Boston Children’s Hospital, which has an SMA clinic that distributes Spinraza. “The SMA clinic at Boston Children’s needs the money for research – they don’t get a lot from the hospital, so we give money to them,” Silva said. Tickets to the gala are $85, more than for any event WOW has held before. There will be food stations, a band, dancing, silent auctions and raffles. The wheelchair-bound young woman writes a blog called AlyssaKSilva.com, a column for SMA News Today called “Life, One Cup at a Time,” and graduated from college in 2013 with a business degree in marketing. She hopes to be a writer some day, though she doubts she’ll ever stop raising money for SMA. “It’s my joy, my passion project, but I don’t see it as the main component of my future,” she said. One year, 500 people attended the golf and dinner fundraiser. The annual WOW event generated $37,000 one year. In 2014 Silva decided to obtain nonprofit certification for WOW. Regarding the breakthrough SMA drug, Silva said Spinraza has improved her speech, respiratory function, and stamina. Although she classifies the changes as less than sweeping, the therapy "has made a big difference in my life,” she said. Her family has been her strength through the difficulties she's endured with SMA, Silva said. Her parents and big brother Adam, who is married and lives down the street, have been instrumental in helping her stay optimistic about her future, she said.
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