エピソード

  • EP 3 Carolina Sommer

    EP 3 Carolina Sommer
    2024/11/15
    Carolina Sommer is the CEO and founder of the Born A Hero Research Foundation and co-founder of the Northwest Rare Disease Coalition. A dedicated advocate, author, and lobbyist, Carolina’s journey in the rare disease community began with her daughter’s diagnosis of Pfeiffer syndrome. She has since become a leading voice for rare disease awareness, passionately working to support families and drive forward meaningful change through community-focused initiatives, patient-led research, and policy advocacy. For additional information, please visit https://bornahero.org/
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    46 分
  • EP 2 Jeff Kramer

    EP 2 Jeff Kramer
    2024/11/03
    Jeffrey T. Kramer, M.S. created the Chondrosarcoma Foundation to honor his daughter Shayna Kramer’s legacy. He combines his 24 years of experience in the substance abuse counseling, communication, and marketing with his experience in broadcasting to produce film and videos. In addition, for the past 24 years, Jeffrey has been a certified Emergency Medical Technician and a Volunteer Firefighter for the Prince George’s County Fire Department. Since October, 2000; Mr. Kramer operates his own multimedia production company called Kramer Communications. For more information, please visit https://csfshayna.org/
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    33 分
  • EP 1 Mike Michaelis

    EP 1 Mike Michaelis
    2024/10/08
    Mike Michaelis is the founder and president of The OMSLife Foundation. His passion for OMAS began in 2009 when his oldest granddaughter, Alexa, was diagnosed with OMAS. Since then, his focus has been to build a worldwide support network for patients and caregivers, raise awareness of OMAS, and raise funds for research. Mike is a retired IT executive for a Fortune 500 company, and he started his own company in business process and project management. Mike’s credentials also include the development of the OMS Patient Reported Natural History Study. This collection of fifteen surveys was funded via a grant from NORD and the FDA. At present, they have over 380 contributors to the registry. However, Mike’s passion continues to connect patients with the best care providers available. He has been fortunate to meet over 200 OMAS patients and their families, dozens of OMAS specialists and researchers worldwide. For more information, please visit https://omslifefoundation.org/
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    47 分