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Crowdfunding offers medical patients and researchers chance but no guarantees for financial help

After his hometown visit to Attica, Airman Michael Romanyak headed back to Barksdale Air Force Base near Shreveport, La., when the horrifying crash happened on July 1. A tractor-trailer struck his SUV in a devastating nine-vehicle accident.

He and his wife, Stefani, suffered serious injuries, and his 10-year-old stepdaughter, Bailey, was killed.

Sunnie Tobias, a high school friend, sprang into action.

The Depew resident turned to an Internet website, GoFundme.com, to raise money for the family. The Romanyaks have medical coverage, but Tobias figured they would need help with other expenses while recuperating.

She set a $3,000 goal.

A day later, Tobias collected $12,000. In just over a week, she raised $22,000. She brought in so much more than she expected that she ended the effort a few days ago.

“It blew my mind,” she said. “It was all these connections of people who knew them that began with small-time Attica and spread through the Shreveport and military communities.”

Tobias became one of hundreds of thousands of people who went online to fund health-related causes, spurred by the viral nature of the Internet and social media.

At GoFundMe, individuals in 2014 raised $147 million from about 600,000 appeals in the “Medical, Illness and Healing” category. So far in 2015, the website has more than 740,000 medical appeals, including 450 currently from Western New York, that have raised more than $197 million, according to Kelsea Little, media director.

Medical researchers and institutions are jumping on the trend, too, looking for money to support projects.

But it’s among people beset with medical crises for whom crowdfunding has become so important.

Tiffany Banks, for example, has raised more than $3,000 for her son. She set a $5,000 goal at a GoFundMe page set up by her brother. Like so many people online who open their private lives in an appeal for help, her story proved compelling.

Doctors in June diagnosed Banks’ 11-year-old son, Nathan Aviles, with a fast-growing brain tumor known as a glioblastoma. He underwent surgery to remove as much of the tumor as doctors could safely get – it was the size of a fist – and now faces several months of radiation and then chemotherapy.

“It’s shocking,” Banks said. “To go from having a vibrant kid to thinking about losing him. I want to make his life as good as I can while I still have time with him.”

So she quit her job as a medical assistant to care for Nathan.

The Buffalo woman accepted crowdfunding with reluctance. She wants people to know that she has medical coverage but needs assistance.

“It’s such a weird concept for strangers to give you money. How do you thank them all?” she said. “I’m used to working for my money, and am not good at asking for help.”

Billions raised

Online crowdfunding began about 15 years ago, starting with sites to finance business ideas, arrange loans and support creative projects. It’s now an industry.

The amount raised globally in 2014 reached $16.2 billion, two-and-half-times the amount in 2013, according to Massolution, a research firm that tracks crowdfunding. The amount could double this year to more than $34 billion.

Different sites have formed for different reasons. Most take a cut of the money raised. Others are non-profit.

GiveForward and GoFundMe, for example, deduct a 5 percent fee from each donation, as well as a 3 percent payment processor fee. YouCaring, another site, charges only the processing fee.

Medical crowdfunding is a newer but growing piece of the business.

Thousands of stories are online, many of them about cancer cases or organ transplants. They also range from individuals recovering from assaults to those undergoing transgender surgery.

Small-dollar donations tend to come from family and friends, Indeed, crowdfunding sites advise donors to contribute to the campaigns of those they know and trust to avoid deceptive campaigns.

Some people can tap into extensive networks by virtue of the size of their social circles. Others can’t. Some people – through photos, videos and strong writing – craft powerful messages to donors. Others offer the basic facts – yet may be just as deserving.

The system isn’t fair. Yet the ease of crowdfunding lures patients like Cristy Branning, a dwarf who was born with achondroplasia, the most frequent cause of short stature.

The genetic condition leads to a host of problems, especially spinal stenosis, in which the opening in the spinal column is too small to accommodate the spinal cord, causing numbness and pain.

“It’s something that I have struggled with since my first surgery in 1994,” said Branning, 35, who needs surgery again.

Branning sought treatment from one of the few physicians who specialize in skeletal problems common to little people, Dr. Michael Ain, an orthopedic surgeon at Johns Hopkins Hospital in Baltimore. He also is an achondroplastic dwarf.

The Derby resident overcame an initial reluctance to crowdfund after friends encouraged her to seek help for travel expenses. She is a single mother of two daughters living on a fixed income.

Branning set a goal of $3,500 and, so far, has received $740 from connections she’s made over the years.

“It’s people who know me from Derby or from when I lived in Florida and Alabama,” she said. “In some cases, it’s people you would least expect.”

Researchers seek help

Not wanting to miss out, scientists, physicians and medical institutions also are getting into the game. Experiment.com and Consano.org allow researchers to seek support for their work. MedStartr, among others, crowdfunds for startup health care companies.

Hospitals and cancer centers, including Roswell Park Cancer Institute, have tried crowdfunding as a way to attract new philanthropic donors.

“When we looked at the funds being raised online by crowdfunding, it seemed like a trend we could not ignore,” said Cindy Eller, vice president for development at Roswell Park.

Crowdfunding may seem as easy as pulling money out of a limitless ATM. But it’s not quite so.

It means the crowd decides who gets help and who doesn’t. The crowd picks winners and losers. A campaign with a gripping story helps. So does having large circles of friends and family.

So crowdfunding does not succeed for everyone and everything.

Encouraged by the National Association of Cancer Center Development Officers, Roswell Park and four other cancer centers in 2013 started crowdfunding collaboratively on a cancer-specific website.

Each institution developed a fundraising campaign for the site, such as for brain cancer vaccines and the potential benefits of vitamin D.

The goal was to use crowdfunding to attract new donors beyond the cancer centers’ usual spheres of influence. The cancer centers were willing to risk losing a donation to another institution’s campaign if, in the end, they all benefitted.

It seemed like a great idea, yet only one of the campaigns reached a $5,000 goal.

The lesson learned? Building a crowdfunding website, even a good one for a worthwhile cause, offers no assurance an audience will visit it.

“People aren’t trolling the Internet looking for things to donate to,” Eller said. “They are not going to find you.”

The cancer centers suspended the initiative in January. But Eller said she would consider crowdfunding again under different circumstances.

Potential pitfalls

Crowdfunding for research is just beginning, so it’s difficult to judge its potential.

Advocates see opportunities. They say crowdfunding can engage the public in science and medicine, offer money free of industry influence, and help researchers jump start new ideas, especially at a time of stagnant federal support.

Skeptics see pitfalls. Crowdfunding for research could bypass the usual reviews to ensure a project qualifies as good science and is safe. Deception is possible if projects aren’t fully funded, yet researchers use what donations they receive for other purposes. Crowdfunding also raises the potential for manipulation, say if a doctor solicits money from vulnerable patients.

“Crowdfunding represents a democratized approach to biomedical research that could be exciting, even if it is just seed funding.” said Joshua Perry, an Indiana University professor who studies the ethical and legal concerns of crowdfunded research. “But it also presents some enduring ethical concerns that need to be addressed.”

Linda S. Pescatello, a professor of kinesiology at the University of Connecticut, didn’t think about crowdfunding until Experiment.com contacted her and suggested she give the website a try.

She successfully reached a goal of $6,500 to expand an existing study of ways to match the right forms of exercise to the body’s genetic makeup. But it took more effort than she anticipated.

“It was an educational experience. We learned that it’s up to the investigative team to spread the word to their own friends and family. Those are the people who donated. That took a lot of work of mainly sending emails to all our social contacts,” Pescatello said.

Would she try it again?

“It would have to be the right opportunity,” she said. “The stars would have to align. I would not naturally seek it out.”

email: hdavis@buffnews.com