A Young Woman’s SMA Fundraising Journey from Lemonade Stand to Gala Celebrating Spinraza

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.

Courtesy of Alyssa Silva

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. The venue, new Skyline at Waterplace, overlooks the city.

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.

“In the past it was a sit-down dinner for people to relax. This year we want the SMA community to celebrate the milestones we’ve reached,” Silva said. She said ticket sales have already surpassed expectations. For more information, visit this site.

How did Silva get to the point where she does big-event fundraising? Part of it may be her enthusiasm and energy, which seem endless.

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.

By the age of 10 she decided she wanted to run her own company, and began designing thank-you and other cards with colored pencils. Her fledgling business was covered in the local media, “and it really took off,” Silva said.

“All I wanted to do was raise $100 and donate it to the Families of SMA, which is now Cure SMA,” she recalled.

In 2010 her best friend’s mother suggested she hold a golf tournament and dinner to raise money. “That was the first year of my fundraisers,” Silva said. “It was really small, just 100 people, but that was the beginning of something better as more people were made aware of WOW and SMA and wanted to join us.”

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.

“We have a committee of about 25 people helping because there’s no way I could do this alone,” she said. “They work tirelessly to make this a success every year.”

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.

Alyssa Silva’s life is the focus of a full-length documentary that Animus Studios filmed and produced in Rhode Island. Funds for the project were donated.

The documentary, called “Dare to Be Remarkable,” won first place in the Humanitarian Films category of  the 2016 Rhode Island International Film Festival. Silva expects it to be released in coming months.

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.

Silva has amassed a large following of donors and friends — from sports celebrities (Silva’s a huge fan on the New England Patriots, and vice versa) to regular folks who want to see a cure for SMA in their lifetime.

Most of it is due to her personality — vivacious, bubbly, and energetic. She won’t give up, and she won’t give in. “I decided to choose happiness, love, and fulfilling life,” she said.