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Saturday, May. 24, 2008
Alex Wilkinson, 10, of West Decatur, wanted his fifth-grade classmates at Osceola Mills Elementary School to understand that he wasn’t falling down constantly because he was clumsy.
So Alex put together a PowerPoint presentation and several weeks ago told his classmates that he’d been diagnosed with Friedreich’s ataxia, a disease of the nervous system that results in the inability to coordinate voluntary muscle movements.
He told them how they could help him in school. He told them money was needed to fund research into the disease for which there is now no cure or effective treatment.
His fellow students wasted no time. They had contests, such as “penny wars,” and fundraisers such as a sneaker sale and a silent auction. They gave their own money and collected donations.
At an assembly Friday, they presented Alex with a check for $10,258 for the Friedreich’s Ataxia Research Alliance, a nonprofit organization that pursues research aimed at finding treatments and a cure for the disease.
“That’s really amazing, I’m really kind of speechless,” Alex said. “What these guys did is 10 times what I thought we would raise.”
They celebrated by presenting awards to the people who raised the most money, and community donations were presented.
Afterwards, the students participated in a “walk-a-thon” through Osceola Mills.
Friedreich’s ataxia causes progressive damage to the nervous system, resulting in symptoms including gait disturbance, speech problems and heart disease. A patient must inherit two affected genes, one from each parent, for the disease to develop. About one in every 50,000 people in the U.S. are affected by the disease.
Alex said he started experiencing symptoms about five years ago. After he was diagnosed with Friedreich’s ataxia about six weeks ago, he said, he didn’t waste time in taking action.
“After all the tears and the heartache and everything, I got on the computer right away,” he said. “I know all the ins and outs of (the disease).”
People with Friedreich’s ataxia are currently expected to live into their 30s, said Greg Minarchik, Alex’s grandfather. As patients get older, he said, the vein, artery and heart muscles all have to work harder, which leads to other health problems, such as diabetes.
Minarchik, who teaches English as a Second Language at Osceola Mills Elementary, said his grandson wanted his classmates to understand why he was constantly bumping into people in the school hallways.
“He wants everybody in this school to understand why this is happening and it just kind of took off from there,” Minarchik said.
“He made up his mind from the get-go that he was going to find a cure for this,” he added.
A 5K walk to raise money for the cause is scheduled for June 28 at the Philipsburg-Osceola Area High School track. Registration will begin at 9 a.m., with the walk to follow at 10:15 a.m.
Alex said he is optimistic about his future.
“It’s going to be really exciting if they put this money to good use,” he said.
HOW TO HELP
For more information on Friedreich’s ataxia, or to donate to Friedreich’s Ataxia Research Alliance, visit www.curefa.org. A 5K walk to raise money for the cause is scheduled for June 28 at the Philipsburg-Osceola Area High School track.
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The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.
Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!
Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:
1) Gene Therapy for Friedreich's Ataxia research project:
The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.
2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.
The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.