Updated: Jun 5
Devastated by a friend’s rare disease diagnosis, nine-year-old Dana Perella set out to help raise funds towards finding a cure. What she didn't know was she would start a movement and raise LOTS of money for rare disease causes and become an inspiration to others. Dana is certainly showing the adults how it’s done, and proving that whatever your age, with a positive mindset and an incredible belief in just what you can achieve in this life, nothing is impossible!
"I didn’t set out to start a non-profit. I started selling cookies to help save my friend Mila’s life."
Hi, I’m Dana. I’m nine years old and I’m the founder of Cookies4Cures, a non-profit that raises money to fund research into rare paediatric diseases by baking cookies. So far, my organisation has baked more than 17,000 cookies and we’ve raised over $100,000!
I’m a normal kid, but I’ve made a big difference because I keep a positive mindset. I always believe that I can do things that seem impossible.
When I was seven years old, I found out that my friend, Mila, was sick with a rare and fatal disease called Batten. I was devastated. Then I found out that Mila’s mom was raising money to fund research for a cure. That gave me a tiny bit of hope and I wanted to help. My mom and I decided to bake and sell cookies. My first fundraising goal was $1,000, which seemed like so much money. Every weekend, we loaded homemade cookies into my red wagon and sold them around my neighbourhood. I taped a sign to the side that said, “Cookies4Mila.” It took three months to achieve my goal, but I finally did it.
Mila’s mom convinced me to start a GoFundMe campaign, and I guess people were inspired by my story because my site went viral. I found more friends to help and we started holding cookie pop-ups. By the end of the year, we had raised $56,000 and helped Mila’s family fund research that led to the first ever treatment for Mila’s form of Batten, which the scientists named Milasen.
Since her treatments, Mila has been doing so much better. She used to have 30 seizures every day, and now she usually has zero. When Mila started her treatments, my mom asked if I was done raising money. I said, “No way!” I had another friend, Ollie, who developed PANS (paediatric acute-onset neuropsychiatric syndrome). So I started Cookies4PANS. So far, we’ve raised over $40,000 for the Stanford PANS clinic, and they used that money to hire a postdoc researcher so they could do even more research.
"Last year, I was honoured with the Rising Star Award at the Global Genes Patient Advocacy Summit. I met so many amazing people, and I realized how many more rare childhood diseases there are that I could help with."
My organisation is called Cookies4Cures, and my vision is to have a campaign targeted at every rare childhood disease. I started with Cookies4Mila to fund research into Batten. Then I created Cookies4PANS. This year, we are launching Cookies4HAE and Cookies4SMA.
With Cookies4HAE, we are partnering with the US Hereditary Angioedema Association (HAEA). We held the training a few weeks ago, and we already have teams of kids across the country holding their own Cookies4HAE cookie pop-ups.
I am especially excited about our SMA (spinal muscular atrophy) campaign. We are partnering with Cure SMA, and we are committed to raising $50,000, which will be half of a research grant. We launched Cookies4SMA on Rare Disease Day, and we already have over $5,000. Even though $50,000 is a lot of money, I know we can do it!
My amazing and super special friend, Ben, has SMA, and I really hope that the research we fund will help him.
Dana and Ben, super special friends
I hope that if you are reading this article, you are inspired to make a difference for the rare diseases that have impacted you and your loved ones. Maybe you want to start a Cookies4Cures fundraiser (email my mom!) or maybe you want to do something else.
For anyone who wants to change the world, I have two pieces of advice:
1. believe in yourself
2. just start
It’s so easy to think about all the things that might go wrong, but the truth is, if you start, and you believe that your goal is possible, so long as you keep working on it, it will happen. You can accomplish an awful lot with perseverance, even if you don’t know what you are doing.
When I started Cookies4Cures almost three years ago, I had no idea what I was getting into. In the beginning, I didn’t even know how to bake cookies. I’ve learned everything along the way.
Changing the world is hard work. It’s exhausting, never-ending, amazing, and miraculous. Anyone and everyone can do it, even you! Believe in yourself, and just start!
With hope, butter, and love,
To find out more about Dana and her amazing Cookies 4 Cures
If you would like to bake one of Dana's cookie recipes, click HERE