Finding Hope and Support in the Face of GLA
Sean's life took a turn in 2012 when his son was diagnosed with GLA, a rare and challenging disease. This journey led him to the CLA community, a beacon of support and understanding. In a crucial moment, Sean and his wife Michelle, encouraged by their doctors in Cincinnati, attended the first Patient Conference in Dallas in 2014. There, they met Jack Kelly, whose passion for the Lymphangiomatosis & Gorham's Disease Alliance (LGDA) resonated with them.
The Struggle with the Medical and Insurance Systems
Navigating the complexities of the medical community in their locality was a struggle, as few doctors had experience with GLA. Moreover, health insurance hurdles labeled many treatment options as "experimental," limiting access to necessary care. This experience illuminated the dire need for advocacy in the GLA community, a role Sean felt increasingly drawn to.
A Leader in Business and Community
Away from his advocacy, Sean is the third-generation owner of Chastain Otis Insurance Agency in Omaha, NE. Since taking the reins in 1998, after graduating with a BS in Business Management from the University of Nebraska Omaha, he has shown exemplary leadership. He's been an active board member and president of the Independent Insurance Agents of Omaha, and he continues to contribute to various boards within the Independent Insurance Agents of Nebraska.
Personal Life: A Balance of Relaxation and Support
Sean finds balance in life through leisure and community support. He cherishes time spent at his family’s lake house in Osage Beach and enjoys golfing with friends, despite his self-proclaimed lack of skill. A true Nebraskan, he is a dedicated supporter of the Huskers, especially during the football season.
Conclusion: A Commitment to Change
Sean's journey is not just a personal story; it's a narrative of resilience, leadership, and the power of community support. His experiences in the medical and insurance arenas have not only shaped his advocacy but also highlighted the importance of having informed and compassionate allies in the fight against rare diseases like GLA. As he continues to balance his professional responsibilities with his passion for advocacy, Sean stands as a beacon of hope and a testament to the power of community support and resilience.
