Everyday causes surface worthy of support and awareness. Occasionally with the right breaks on social media and online, these causes garner attention from people outside immediate friends and family, captivate strangers and inspire them to advocate and support something they were otherwise unfamiliar with. 10,000 cookies and nearly $90,000 later, it’s safe to say nine-year-old Dana Perella has done just that. Her recent advocacy efforts have raised funds and awareness for two rare diseases.
When Dana’s friend Mila was diagnosed in 2017 with Batten disease, a neurodegenerative genetic condition causing mental and motor deterioration, Dana felt the overwhelming need to help. With support from her mom, she turned to baking cookies to help her friend afford the treatment she needed. Dana took to the streets of her neighborhood with a red wagon full of cookies, sharing her friend’s story in hopes someone would buy a few cookies to help fund treatment for a rare disease, most, if not all had never heard of. Three months later, after raising awareness and winning the hearts of her community, Dana exceeded her inital goal and raised more than $1,000.
After a suggestion to move fundraising online, Cookies4Cures landed on the front page of GoFundMe, gathering momentum and helping Dana reach a grand total of more than $50,000. That $50,000 helped support the research that ultimately led to a successful treatment opportunity for Mila.
Are you done?
Once the dust settled and the majority of the fundraising was over, Dana’s mom asked her daughter, “So, are you done?” The spirited and optimistic Dana yelled, “I’m not done!” Looking to make another impact in childhood rare disease, Dana set her sights on helping another friend, Ollie, who had been recently diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). PANS, a rare disease, is a clinical diagnosis given to children who experience onset neuropsychiatric symptoms including obsessions or compulsions. Inspired once again to help impact the life of a friend, Dana set a new goal and begin fundraising once more.
Dana and Cookies4Cures proceeded to again display the power of community and grassroots advocacy as the organization raised more than $30,000. The funds were donated to the Stanford PANS Clinic, helping the clinic hire postdoc researcher Dr. Shamma Shakila Rahman.
In between school, acting classes and typical nine-year-old activities, Dana has inspired a community to rally for rare disease and made a significant impact in the research and treatment for both Batten’s disease and PANS.
She recently launched a new website and intends to continue advocating for childhood rare disease. This year, she has her sights set on supporting the research at the Stanford PANS Clinic, where she will help fund Drs. Rahman and Mellins’ lab in the hopes of finding a treatment for Ollie and others living with PANS. Long term, Cookies4Cures plans to continue fundraising and sharing the stories of children diagnosed with rare conditions.
More people means more bake sales and more bake sales means more research. – Dana Perella
Dana’s simple, yet inspiring advocacy work is a refreshing reminder that advocacy work, no matter where or how it begins, can create real impact in a community. Dana was selected by the rare disease community as a 2019 RARE Champion of Hope awardee. She will be honored at the RARE Champion of Hope Awards reception following the RARE Patient Advocacy Summit where she says she’ll have her business cards ready, and is hoping to connect with others in the rare disease community with compelling stories she can help advocate for. View the entire list of 2019 RARE Champion of Hope awardees.