Dad Starts ‘Finish Line Fund’ to Raise Money for FA Research and Help Save His Daughter

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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An attorney in Sioux Falls, South Dakota, has taken up the challenge to raise $75,000 before Christmas to fund a Friedreich’s ataxia (FA) study project at Sanford Research, after his daughter was diagnosed with the neuromuscular condition.

Brendtro started a crowdfunding campaign, The Finish Line Fund, to fund the study at Sanford after learning about their long-time collaboration with FA advocates and previous projects with interesting findings.

His goal is to raise $75,000 by Christmas day. At the time this article was written, 435 backers have helped him raise $69,157, or 92 percent of his total goal.

Brendtro discovered his daughter Raena had FA at Sanford Children’s Hospital, also in Sioux Falls. At the time, the pediatric neurologist who delivered the diagnosis said there was no treatment or cure. He said Raena could expect to be in a wheelchair before high school graduation and her lifetime was also compromised.

Like other parents who are faced with such a diagnosis, Brendtro felt like he had to do more to help his daughter and other children in the same situation. She entered a mid-stage clinical trial, but that drug was proved unsuccessful, and indeed, in September 2016, when she began her sophomore year, Raena did so in a wheelchair.

Brendtro eventually learned about the Friedreich’s Ataxia Research Alliance (FARA) fundraising groups, but he realized the amount of money he could raise through that platform wasn’t enough to fund what he had in mind.

During his solo investigations through his contacts at Sanford, Brendtro discovered that a novel idea to treat the disease had been briefly studied in 2012, in a collaborative study between Sanford Research and the Mayo Clinic. Unfortunately, after the funding ended, the lead researcher retired and follow-up studies were shut down.

The idea involved the relationship between the frataxin protein (FXN) and an enzyme called peroxiredoxin-3 (Prdx3). Other researchers had also suggested that Prdx3 could have a potential link to FA.

Even though there was value seen in studying the interactions between frataxin and Prdx3, the project had ended, and there was no funding to follow up on these discoveries. The study was never published and the data was kept, although unused and nearly forgotten.

Brendtro then talked to an associate scientist at Sanford Research, Peter Vitiello, who was willing to pick up the project, if additional funds were secured.

Brendtro decided to turn to crowdfunding and start his own “but-for-us” campaign, which is how The Finish Line Fund on Indiegogo came to be. It also saved time on getting grant proposals approved.

“We do not have time to wait,” he said in a story on KDLT TV, an NBC affiliate in Sioux Falls. “My daughter is not getting any younger at the cell level.”

Vitiello’s lab at Sanford is ready to start working on this project, once the funding is raised. Those who wish to donate and help meet Brendtro’s goal by Christmas can do so here.

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