ClimbFARACure: How Summiting Aconcagua Raised Friedreich’s Ataxia Awareness

It was never just about reaching the summit of Aconcagua, the highest mountain in both the Western and Southern hemispheres. For Scott Osleeb, scaling the heights of this remarkable peak was more than just a personal triumph; it was a daring quest fueled by purpose. His ascent, which he documented on his Instagram page ClimbFARACure, aimed at elevating hope—and raising funds—for the Friedreich’s Ataxia Research Alliance (FARA). 

His journey began about one decade ago when he met Scott Smith in 2014. Shortly after, Osleeb was diagnosed with stage IV leukemia. Smith kept in touch throughout Osleeb’s entire treatment journey, providing much needed comfort, support, and hope.

So when Smith’s daughter Grace was diagnosed with Friedreich’s ataxia in 2016, and his daughter Stella shortly after, Osleeb knew that he wanted to provide the same level of comfort and support to his friend. He launched ClimbFARACure and even summited Mount Kilimanjaro to raise funds for FARA and Friedreich’s ataxia awareness. Osleeb has raised more than $11,000 in total.

More recently, reports Allison Miller of CBS Austin, Osleeb summited Aconcagua, reaching the summit on January 18, 2023. He hopes that this experience will unite the community and motivate everyone to continue working towards a cure for this rare condition.

Understanding Friedreich’s Ataxia (FA)

Friedreich’s ataxia is a rare genetic disorder characterized by progressive nervous system damage. FXN gene mutations cause this disorder. Normally, FXN encodes for the production of frataxin, which preserves mitochondrial function. People with this disorder don’t create enough frataxin. As a result, energy production in cells is impaired. Friedreich’s ataxia normally manifests between five and fifteen years old, though some individuals have late-onset or very-late-onset disease that doesn’t manifest until later in life. People with this disorder may also require mobility assistance as their condition progresses.

The hallmark characteristic of Friedreich’s ataxia is (as the name suggests) ataxia, which refers to impaired coordination and problems with balance. Additional symptoms of this condition may include:

  • Worsening muscle weakness
  • Slurred speech
  • Scoliosis 
  • Diabetes 
  • Fatigue
  • Cardiac arrhythmias 
  • Problems with vision and hearing
  • Chest pain
  • Shortness of breath 

Unfortunately, there is no cure for Friedreich’s ataxia. However, ongoing research including initiatives from the FARA are working to uncover not just therapeutic interventions, but an eventual cure.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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