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Women in RARE: Next Gen: Dana Perella

Updated: Jun 26

Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine



About you


13-year-old Dana is the founder of Cookies4Cures, a non-profit that funds research into rare paediatric diseases by baking and selling cookies. She was the 2019 Global Genes Champion of Hope Rising Star, a 2020 winner of the Gloria Barron Prize for Young Heroes, and a 2021 winner of the Diana Award. Dana founded Cookies4Cures on her seventh birthday when she started raising money for her friend, Mila, who had a rare and fatal disorder called Batten. She baked cookies and sold them out of a red wagon with a sign that said “Cookies4Mila.” Since then, Dana’s organization has grown to include over 100 volunteers who have baked more than 20,000 cookies and raised over $300,000 for research into several rare paediatric diseases.


As Dana says, “When a child has a rare disease with no cure, research is hope.” Cookies4Cures funds hope, one cookie at a time.


Your biggest motivation


My goal is to help as many people as possible. That’s the awesome thing about funding research. When scientists learn more about a disease or when a trial for a new treatment is run, everyone with that disease benefits. And not just that, when we learn about one rare disease, that knowledge has the potential to help find treatments and cures for lots of other diseases and conditions. So I love funding research and helping people everywhere with rare diseases.


Even so, my biggest motivation is helping my friends, like little Sophie who has MCTO. When you have a close friend or loved one with a rare disease, it’s really scary and it’s so easy to feel helpless and hopeless. But when I hold cookie pop-ups and raise money for research into their rare diseases, I feel amazing. I know that not only am I being a friend, I’m helping to create hope for their future. It’s like I’m not just being a friend for today, I’m making tomorrow into a world where we can grow up together and stay friends.


Your greatest achievement


My first greatest achievement was raising lots and lots of money for my friend, Mila, who had Batten, and funding Milasen, the first ever treatment for her form of Batten. Even though Milasen was too late to save Mila’s life, it gave us special extra time together and today, that research is still helping other kids with Batten live better. It taught me that research can change the course of a disease and that by funding research, anyone can help save lives.

Now, my greatest achievement is teaching other kids how they can raise money so they can fund research into the diseases that affect them, their friends, and their loved ones. I want every kid out there to know that they have the power to create hope.





What’s next to strive for?


My vision is to have a Cookies4Cures for every rare pediatric disease so everyone can help to find a cure for the diseases they care about.


Advice for up-and-coming advocates


Just start. When I was 7 and began baking cookies for Mila, I had no idea what I was doing. I didn’t even know how to bake cookies. My mom and I found recipes and we just started baking. And I sold the cookies out of my red wagon. And we learned as we went along. If I thought that I had to have a plan to build the Cookies4Cures that exists today back when I was just starting, I never could have done it. It would have seemed too big and too hard.

Instead I just started. And every time we had a problem or an opportunity, we figured it out in the moment with the help of our friends and supporters.


So my advice to anyone who wants to be an advocate for rare diseases or make the world better in any way is to just start. Just do the first thing, and after that, do the next thing, and keep going. But no matter what, the first step will always be to start.


The tide will turn for the rare disease community when...


I am hoping for a future where each rare disease isn’t seen as a small rare disease only affecting a small number of people. And instead, every rare disease is seen as a piece of a larger human puzzle. Every rare disease holds a key to unlocking the secrets of our human bodies, which are all unique and yet also share so much in common. When that happens, I hope that funding for research into rare disease treatments will be seen as a shared human endeavor that everyone contributes to.


And instead of patients and their families funding their own research, treatments, and cures while also managing their diseases, they can focus on living, being as healthy as possible, and contributing to the advancements in science and medicine as partners, not banks. Someday, I hope that all of humanity can carry the burden of funding hope for us all.


 

Socials

Facebook: Cookies4Cures


 







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