Determination of the mind, resilience of the body.
Diagnosed with a rare debilitating disease in 2007, Sean Baumstark has determined to defy all the odds against him with the hopes of inspiring thousands to do the same.
Friedreich’s Ataxia resides in approximately 10,000 individuals in the United States. Friedreich’s Ataxia (FA) is an inherited disease that causes progressive damage to the nervous system resulting in symptoms ranging from gait disturbance and speech problems to heart disease. “Ataxia,” which refers to coordination problems such as clumsy or awkward movements and unsteadiness, occurs in many different diseases and conditions. The ataxia of Friedreich’s ataxia results from the degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs.
The spinal cord of those diagnosed with FA, thins and nerve cells lose some of their myelin sheath — the insular covering on all nerve cells that helps conduct nerve impulses (adapted from NINDS). This disease is usually diagnosed in children between the ages of 5 and 15; most of those patients end up in a wheelchair before they graduate high school.
Challenged by the progressive deterioration of his body, Sean is pushing the limits on all physically challenging adventures. He’s taking dozens with him! Shortly after his diagnosis, while on a hiking excursion with two of his friends, de:terminence™ was birthed.
de:terminence™ raises awareness, increases hope, and motivates people with inflictions into action.
For a mountaineer to summit any peak, he must be determined in his mind to reach it, and resilience must exist in his body to push through the pain of the journey. For an Olympian to cross the finish line, determination must drive her mental state, and resilience must reside in her bones. If the mountaineer or the athlete or the inflicted ever fail on the first attempt, they must be resilient to get up and keep trying – to never give up! It is:
determination of the mind. resilience of the body. ™
de:terminence creates community:
As a community-based, grass-roots initiative, it cultivates community for individuals who face debilitating diseases or disorders, but who choose to defy the odds and create life promoting opportunities for themselves or the people around them.
de:terminence cultivates three fronts:
1) increase awareness for debilitating diseases or disorders
2) bring inspiration and motivation to those inflicted and affected by rare disease or disorders
3) provide opportunities for challenged individuals to succeed.
de:terminence cares with compassion:
Concerned about the ability (or possibility) of physically challenged individuals, de:terminence cares about all aspects of life. Our core belief is rooted in compassion, but challenges the diagnosed and those they love. Whether it’s to summit life’s mountains, conquer daily tasks, or achieve the extraordinary, de:terminence™ is committed to carrying, inspiring, and motivating people to a place of significance.
… the physical and neurological diseases and disorders that keep people from living life to its greatest potential.