Dana Perrella is a 9-year-old on a mission to raise $50,000 for spinal muscular atrophy (SMA) research in 2020. She began baking cookies to raise money for her friend Mila, who is affected by a rare and fatal genetic disorder called Batten. A year later, on behalf of her friend Ollie, she focused her cookie baking efforts on another rare disease called pediatric acute-onset neuropsychiatric syndrome (PANS). Red wagon in tow or outside a grocery store, Dana sets out among her neighborhood to make a difference for other kids. This year, Dana solidified her passion for funding research by creating Cookies4Cures and has set her sights on supporting the SMA community.

“The hardest and scariest part of getting involved in something like this was getting started,” said Dana. “When I began, I was super shy, and I didn’t even know how to bake. Now, I can make cookies all by myself and give speeches in front of large audiences. Anyone can do it!”

                        Dana and Ben cookie tasting.

In recognition for her fundraising efforts for Batten and PANS, Global Genes invited Dana to its annual “Tribute to Champions of Hope Gala,” where she received the Rising Star Award. That’s where her friendship with Ben Lou, a teen with SMA Type 1, took center stage. Dana and Ben first met backstage at a Lenny Kravitz concert, where they both met the singer and pick up a signed guitar for the Global Genes gala. Ben was first honored as the Global Genes Patient Ambassador in 2015 and, four years later, he was presenting Dana with her Rising Star Award.

Ben is a 16-year-old who was diagnosed with SMA at the age of 1 year. From the start, Ben has had total body weakness—unable to bear any weight on his arms or legs and relying on other people to help him with his daily activities. Despite these physical challenges Ben faces every day, SMA hasn’t stopped him from reaching his goals. Ben is fluent in English and Chinese. He’s fascinated with advanced mathematics, biosciences, and the workings of the universe. And last summer, he was admitted to a highly selective math camp as one of the top mathletes in world!

“I want to be a prominent researcher one day,” said Ben. “I hope to make significant advances in math, science, and healthcare. And I hope to do some research on SMA itself.” We will be highlighting Ben’s amazing story in the coming weeks in a separate Community Spotlight.

Cookies4Cures are partnering with Cure SMA to raise $50,000 for SMA research. You can help in this cause by donating online via GoFundMe. As part of Cure SMA’s August SMA Awareness Month activities, we will be releasing a Cookies4SMA toolkit to help you plan a successful bake sale to further support Dana’s mission.