Stephanie Bozarth serves as the President of the Board of Directors at the National MPS Society, where she passionately advocates for individuals affected by Mucopolysaccharidoses (MPS) and related lysosomal storage disorders. Her personal journey, driven by the challenges faced by her daughter, fuels her commitment...
Stephanie Bozarth serves as the President of the Board of Directors at the National MPS Society, where she passionately advocates for individuals affected by Mucopolysaccharidoses (MPS) and related lysosomal storage disorders. Her personal journey, driven by the challenges faced by her daughter, fuels her commitment to eliminating barriers for families navigating these complex conditions. Under her leadership, the Society has launched key initiatives aimed at funding groundbreaking research, enhancing community education, and fostering legislative advocacy to improve access to essential resources and treatments.
As Chair of the Committee on Federal Legislation, Stephanie plays a pivotal role in shaping policies that directly impact the MPS and ML community. Her expertise in grants and philanthropy has been instrumental in securing funding for innovative research projects that aim to advance treatment options and improve quality of life for affected individuals. Through her community organizing efforts, she has successfully mobilized families and advocates to raise awareness and drive legislative change, ensuring that the voices of those impacted by MPS are heard at the national level.
Stephanie’s background in medical social work and case management equips her with a unique perspective on the challenges faced by families dealing with rare diseases. Her skills in motivational interviewing and youth development further enhance her ability to connect with and empower community members. By fostering collaboration among stakeholders, Stephanie is dedicated to creating a supportive environment that not only addresses the immediate needs of those affected by MPS but also paves the way for a brighter future through research and advocacy. Through her unwavering commitment, she continues to inspire hope and resilience within the MPS and ML community.
