DENVER, CO (Ivanhoe Newswire) — Twenty-five million people are living with a life threatening, life altering, rare disease. A disease is considered rare when it affects less than 200 thousand people in the United States. Currently, there are 68 hundred rare diseases that have been discovered. Many of them can be complex, hard to diagnose, and less than five percent have an FDA approved treatment. Funding has always been an obstacle. Big pharmaceutical companies focus their development on drugs that impact the most people. That’s why one little girl is taking it upon herself to raise money to fund research into rare diseases, and she’s doing it one child, one cookie at a time. Cookies4cures
Measure, mix, bake, sell. Repeat! This is the drill for 13-year-old Dana Perella and her army of bakers. They have one mission in mind. It all began when Dana and her mom, Alexis, wanted to help their friend Mela who was living with a fatal disease called Battan.
“I was absolutely devastated,” said Dana.
“I was not a baker. She was not a baker. But we got a cookie recipe, and we baked some cookies, and we loaded them up in the red wagon and she would just pull it, you know, around the neighborhood and knock on people’s doors and tell them about what she was doing,” says Alexis.
They started baking cookies and selling them around the neighborhood.
“She was so little, this little girl just pulling her wagon around trying to save the life of, of her friend. It was really incredible,” shared Alexis.
“It took me three months at first to raise my first a thousand dollars,” said Dana.
In a year, that number grew to 56 thousand dollars raised for research. Doctors did end up finding a treatment, but it was too late for Mela.
“After that I discovered that my friend Ollie had also developed a different rare disease. I did end up raising 30 thousand dollars and hiring a new postdoc researcher at the Stanford Pans Clinic, which was really, really cool,” spoke Dana.
In 2017 dana started Cookies4Cures, a way kids can help kids, like Sophie who has a disease that makes her bones dissolve. Dana has raised more than 10 thousand dollars to aid in research for Sophie.
“Sophie is like a younger sister to me,” says Dana.
“It’s made a big difference in what we can do and the researchers we can fund,” said Lauren Rosenburg, Sophie’s mom.
Through her non-profit, Dana gives kids across the country an outline on how to make cookie pop-ups and is now working with organizations to create their own branch of Cookies4Cures.
“It’s extended much farther than the kids that I personally know,” spoke Dana.
Even while juggling life as a middle-schooler, Cookies4Cures has raised more than 300 thousand dollars.
“Kids are an amazingly untapped resource. They have so much heart and passion and energy and they want to help,” said Alexis.
Dana’s goal is to someday have a Cookies4Cures campaign for every single rare pediatric disease.
“If you try your hardest and you really want to make something happen, you can do it no matter how young you are,” said Dana.
Dana is hoping to donate small grants for advertising and supplies to help kids in other states get started and hopes by sharing her business plan that kids will be able to use it and start their own Cookies4Cures. You can find out more at cookies4cure.com. More good news is Dana is getting some extra help from the National Institutes of Health. They’ve recently announced a 500-million-dollar initiative to fund more research into rare diseases, with a particular emphasis on improving diagnosis and treatment options for children.
Sources:
https://www.cookies4cures.com/
Contributors to this news report include: Marsha Lewis, Producer; Roque Correa, Videographer and Editor.
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