When Raeno Brendtro was asked to sit down after her diagnosis, she refused. She needed to stand for as long as she could, now that her time was limited.
The rare disease is known as Friedreich’s Ataxia, and it results in complete loss of leg mobility during high school time and usually leads to death in a patients 20’s, when the disease targets the heart and other organs. To learn more about Friedreich Ataxia, click here.
Four and a half years after the diagnosis, Raena is now a 16-year-old junior at Lincoln High School, and she uses a wheelchair as the disease slowly dissolves her mobility.
Fortunately, a study on the disease was in full swing during Raena’s diagnosis. Pete Vitiello, a scientist at Sanford Research had been diving deep into a protein that is at the heart of the disorder. This protein was associated with an antioxidant enzyme, but the study ended here, incomplete and underfunded.
Today, Raena’s father Dan, is trying to raise money to pick up that study right where it left off. He has recruited Vitiello. The two have launched a crowdfunding campaign in hopes of raising $75,000. The money would go toward Vitiello re-opening his study on the protein by the New Year. Dan and Raena cannot rely on the slow process of government grants and foundations to finance the research so they are taking matters into their own hands.
The study will determine whether the antioxidant enzyme helps create the disease, or whether it’s a victim to it. Within a few months, they could have their answer.
Friedrich’s Ataxia is so rare that only 100 people a year are diagnosed with it in the United States.
The team is well aware that the study might not uncover a cure for Raena, but at the very least, it can confirm whether or not the enzyme has a role in the disease, at which point they can move forward onto the next item.
If you would like to learn more about their fundraiser and contribute, you can do so by clicking here.
“we could give a Christmas gift of a research study to the 4,000 kids, young adults, in the United States who have this disease, and to their 8,000 parents,” Brendtro said to the Argus Leader.