The first Hayden’s Hope Warrior Run has good turnout Saturday

The-Despenas-Family,-Dana,-Sarah,-Hayden-Carter-and-Brett — The Despenas Family: From left, Sarah, Hayden, Dana, Carter and Brett

by Jody Spear and Kelly Meyer –

MASON CITY – There was a very good turnout for the first Hayden’s Hope Warrior Run, held Saturday morning. Starting downtown on State Street the 5K and 10K run began around 9:15 am.

The Mason City Youth Hockey Team was there to support Hayden. A lady taking pictures said, “I think Hayden used to play.” The hockey team also participated the run.

Before the run, Sarah Despenas (Hayden’s mom) spoke to the people. She was asking for their help in working for more research. “There is so little known about FA (Friedreich’s Ataxia), more research needs to be done.” The whole Despenas family got involved in the race, Sarah, Dana and their boys Hayden, Carter and Brett and even Sarah’s mother was there supporting her grandson.

“FA is a rare disease, only 5,000 people diagnosed in the United States, we need support from people like you! Please consider Hayden’s Hope for your charitable contribution this year. Every dollar counts!! A viable treatment is at our fingertips!,” was the plea before the race.

After the run, the people were invited for a afternoon full of fun at a carnival set up in Central Park. The party went on until 4:00 pm.

Carrie Galkin, Kid’s Carnival Coordinator and best friends with the Despenas family for at least ten years said, “They, as did so many others, did so much for me when my husband, Chuck, past eight years ago, I wanted to return the favor. My fiancée, Pat O’hern and I, have stayed up til 2:00 AM every night coming up with ideas for the games, figuring out how to set them up and actually making the games. This is going to be a wonderful, glorious day.”

There were also silent and live auctions at the Park Inn Hotel. Tickets to the games were only $1.00 per ticket. There was food prepared and live music was playing for all to enjoy.

The National Institute of Neurological Disorders and Stroke tells some facts about this disease. Friedreich’s ataxia (also called FA or FRDA) is a rare inherited disease that causes nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time. The disorder is named after Nicholaus Friedreich, a German doctor who first described the condition in the 1860s.

In Friedreich’s ataxia the spinal cord and peripheral nerves degenerate, becoming thinner. The cerebellum, part of the brain that coordinates balance and movement, also degenerates to a lesser extent. This damage results in awkward, unsteady movements and impaired sensory functions. The disorder also causes problems in the heart and spine, and some people with the condition develop diabetes. The disorder does not affect thinking and reasoning abilities (cognitive functions).

Friedreich’s ataxia is caused by a defect (mutation) in a gene labeled FXN. The disorder is recessive, meaning it occurs only in someone who inherits two defective copies of the gene, one from each parent. Although rare, Friedreich’s ataxia is the most common form of hereditary ataxia, affecting about 1 in every 50,000 people in the United States. Both male and female children can inherit the disorder.

Within the Federal government the National Institute of Neurological Disorders and Stroke (NINDS), a component of the National Institutes of Health (NIH), has primary responsibility for sponsoring research on neurological disorders. As part of this mission, the NINDS conducts research on Friedreich’s ataxia and other forms of inherited ataxias at its facilities at the NIH and supports additional studies at medical centers throughout the United States. Several nonprofit organizations also provide substantial support research.

Researchers are optimistic that they have begun to understand the causes of the disease, and work has begun to develop effective treatments and prevention strategies for Friedreich’s ataxia. Scientists have been able to create various models of the disease in yeast and mice which have facilitated understanding the cause of the disease and are now being used for drug discovery and the development of novel treatments.

Learn more and make a donation at cureFA4hayden.com