Sioux Falls, SD
Friedreichs ataxia, or FA, is a neuro-muscular disorder that affects about one in 50,000 people in the U.S. according to the FA Research Alliance.
When one local girl was diagnosed with the disease, her father made it his mission to find a cure.
"We are taking contributions from friends, family, and total strangers and putting that money together to raise $75,000 in order to restart a research study," Dan Brendtro said.
Four and a half years ago, doctors diagnosed Dan Brendtro's daughter, Raena, with Friedreichs ataxia.
"It's making her ability to walk a little worse each day; it's attacking her heart a little more each day. And there's no known treatment, and no known cure," Dan said.
Raena is now 16 years old. Two months ago, after what the family calls a lucky series of coincidences, they got a new sense of hope.
"We discovered that there is a half-finished research study that had been done in 2012. It was a collaboration between the Mayo Clinic and Sanford Research," Dan said.
Researchers had made a novel finding about an enzyme that was associated with the disease.
"The study then stopped. It was literally put in a drawer. The materials put in a freezer. The information put in a drawer," Dan said.
One of the researchers retired, and so did the research. Dan knew he had to do something.
"So when I made contact with Dan, and saw how passionate he was, and was able to meet his daughter, this was one of those times where I said, 'We're going to do something here no matter what it takes,'" Peter Vitiello said.
After just one week of crowd funding, Dan has raised more than $30,000 and hopes to get the rest within the next couple of weeks.
After raising all of the money, researchers are expecting to spend about one year to determine if they're on the right path.
Because both men know they may come out of the study with no end answer.
"What we want to do here is figure out what's dis-functioning the disease and give all scientists that are researching this area an opportunity to think of new therapies that they're not currently exploring," Vitiello said.
"At some point, you start to get more desperate and you want to push this faster toward the finish line," Dan said.
All of this so Dan can continue to tell his daughter how courageous she is for many, many years.
If you're interested in donating to help fund the research, click here.
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