Marie Arturi: Fighting for a Cure

Marie Arturi

I walked in to meet Marie Arturi at headquarters, a social media company that she founded and is based in Riverhead, and was immediately greeted with a big smile and a fleece vest. Her office has a huge Silicon Valley vibe, complete with a team of twentysomethings working away to keep up and running. The only thing missing from the office was a Ping Pong table.

Arturi is not your typical techie though. She was there at the beginning of the tech revolution, along with her husband Manny, and watched the computer business grow during one of the largest booms in American history. Arturi and her IT company, which she sold, were at the center of it all. But her story is much more than a tech success story; it has everything to do with her relentless pursuit of finding a cure for Diamond-Blackfan Anemia, which took her daughter from her.

The entrepreneur comes from European roots, “I was actually born in Scotland and came here when I was about two. I grew up on Long Island in Bayside. Everybody is all-Scots in my family. I went to [SUNYFredonia in Buffalo for economics. I was always a hard worker, I graduated high school early because I loved working so much. When I got out of school I got into IT consulting and built a business when I was very young, then sold it. I came into the IT business really when it was just being formed and worked with some of the founding fathers in that business.” [expand]

You could even say that she and her husband WERE some of the founding fathers of the IT consulting business. And Arturi found her husband Manny through work.

“When my husband and I first started dating, we actually started competing companies, and we played to win. But it didn’t matter too much, only a couple of times did we really butt heads.”

When she found success in the Manhattan business world, Arturi and her husband decided to start to raise a family. But what seemed to be the picture-perfectAmerican story rapidly began to turn into a nightmare when her daughter was diagnosed with Diamond-Blackfan Anemia, a rare blood disorder that shows up in the first year of life, characterized by a failure of the bone marrow (the center of the bone where blood cells are made) to produce red blood cells. This failure causes DBA patients to become severely anemic and her daughter eventually succumbed to the disease. There is no cure, and treatments carry side effects and severe risks.

“My daughter died as a result of treatment complications. Nearly everything went wrong with her treatment, and I knew I needed to do something about it. And it somehow dawned in my head that I wanted to start a foundation to help find a cure for this disease. I literally said to one of the head doctors at Mount Sinai that I wanted to get everyone that was an expert on this disease into a room. So that’s what we did.”

In short order, this very small meeting turned into what is today called the Daniella Maria Arturi Foundation. Over the last 10 years, her foundation has raised over $1.8 million dollars through private donations, an annual golf outing, silent auction and a dinner.

The foundation that Arturi founded and runs is the leading foundation for the disease when it comes to research. “We have an absolutely amazing medical team,” she says. “Some of the best and most prestigious doctors in the world are a part of it. The type of support and commitment that we’ve had from some of the world’s most astounding scientists has been incredible. It’s  been  extremely  humbling for me.”

Tim Bishop has been terrific in getting political people involved, as well as Carolyn McCarthy, a congresswoman from Garden City. There are no words to describe how helpful Carolyn has been. She has been able to get over 200 members of Congress as well as Bush and Obama involved. In one day, she was able to get over 100 signatures from her constituents to help pass a resolution for us that needed to be done.” [/expand]

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