Fifteen years ago, Marie and Manny Arturi of Laurel lost their 7-month-old daughter to complications of a rare disease.
Now the couple is hoping their Riverhead-based startup company will help ensure no other parent has to suffer the same fate.
The Arturis say they plan to donate the profits from Buncee, an online multimedia-making tool, to support research on Diamond Blackfan Anemia (DBA), the disease that claimed their daughter’s life.
In 1996, a blood test confirmed that 3-month-old Daniella Arturi had DBA, a rare disorder that prevents the body from making enough red blood cells. In most cases DBA is not fatal and, when treated with blood transfusions and steroids treatments, people can live normal lives with the disease. About 20 percent of those diagnosed go into remission, according to the Diamond Blackfan Anemia Foundation.
But 15 years ago doctors were unfamiliar with the disease, which has 1,000 documented cases worldwide, and were unsure of the best course of action to treat Daniella. And due to complications while trying to control the disorder, Daniella died at a New York City hospital from failure of an artificial respirator.
Rather than pursue legal action against the doctors and hospital, the grief-stricken couple founded the Daniella Marie Arturi Foundation to advocate for research into a DBA cure.
“We decided it would be a lot better to take that energy and do something positive with it,” Ms. Arturi said.
Since its creation in 1996, the foundation has successfully lobbied the federal government to allot $35 million toward cure research. It has also raised $2.65 million in private donations.
But to keep the search for a cure going, the Arturis acknowledge that they’ll need a lot more money.
That’s where Buncee comes in.
Buncee is a social media platform used to enable communication among users who create multimedia images using a combination of photos, clip art, text and video. The software is available at Buncee.com and on three different apps: Buncee Mom (launched just in time for Mother’s Day), Buncee Free and Buncee Pro for the iPad. The apps, which have all been featured on iTunes “new and noteworthy” section, will likely come to mobile smartphones in the future, Ms. Arturi said.
The software can be used to make e-cards, invitations or more formal and professional multimedia presentations.
“It’s an online card that is very personalized,” Ms. Arturi said. “There’s any reason to create a Buncee.”
So far the product has drawn about 3,000 users, but Buncee’s team of engineers, artists and strategists hope that number will grow exponentially.
The Buncee Mom and Buncee Free apps are available free; Buncee Pro, which has more features, costs $1.99. The company is also looking to sell the banner ad atop the free apps. Mr. Arturi noted that he and his wife invested their own money to get Buncee off the ground and said they would also eventually be interested in selling the company.
“If it is successful, it would ensure that the foundation is funded for a long, long time,” Mr. Arturi said.
Buncee.com is still in beta testing, though the company will soon make its launch official. The company has six employees in its office on Route 58 in Riverhead, as well as a team in Argentina.
The product is always changing and developers say customers can suggest new features and report bugs on Buncee’s website.
As for the name, Ms. Arturi said Buncee was a nickname her husband used to call her many years ago. It was also the name of a bar in Paterson, N.J., she said.
Mr. Arturi, who runs a Manhattan-based IT consulting firm, gave his wife all the credit for the Buncee idea, and for all she’s done for the foundation.
“When she started the foundation no one thought it would be much more than a way for us to funnel a little bit of our money [toward research efforts],” Mr. Arturi said. “She’s an unbelievable woman. I don’t know many people, including myself, who would have the perseverance.”