Someone You Should Know: The Brendtro’s as They Fight to Cure a Rare Disease
SIOUX FALLS, S.D. – A Sioux Falls family is up against the clock raising money to find a cure for a rare genetic disease.
“We’ll I’m feeling a lot of things,” says Raena.
That’s Raena Brendtro. She was diagnosed with Friedreich’s Ataxia at 12 years-old.
FA for short is a protein deficiency that attacks nerve and heart cells with no known cure or treatment.
Nationwide, about 4,000 people have FA. Patients typically require a wheelchair before graduating high school and suffer from teenage-onset heart disease.
The Brendtro’s remember the diagnosis vividly.
“It’s grim, it’s glum, it’s not something that you want to face as a family,” says Dan Brendtro.
“He was wondering how a 12 year old could process that, and honestly I was like no- I didn’t get it. No, that’s not me,” says Raena.
Dan recently reached out to Sanford for help.
“You don’t just show up at a research facility and give them money and say can you please cure my daughters disease, but as it turned out that’s exactly what happened,” says Dan.
A researcher there, Peter Vitiello, remembered an incomplete FA study he was a part of in 2012, and wants to pick up where it left off.He says this opportunity is unique since the research and family are based in Sioux Falls.
“Some of these circumstances and chance meetings where enough of them happen that you think more than luck is involved. There’s an opportunity here to explore something that hasn’t yet been uncovered in Friedreich’s Ataxia,” says Peter Vitiello, PhD.
The Brendtro’s are hoping to raise $75,000 in the next three weeks to resume the study right away.
“This last year has been a feeling of desperation. That we’re running out of time,” says Dan.
In that time Raena and her father still look to their futures.
“To spend the rest of her life writing and acting, and with a degenerative disease you’re up against the clock,” says Dan.
The Brendtro’s have already raised more than 50% of the goal through The Finish Line Fund, an online funding platform.