Episodes

  • EP 5 Kate Vinokurov

    EP 5 Kate Vinokurov
    Dec 10 2024
    Kate Vinokurov is the founder of Cure OTCD, a nonprofit organization dedicated to finding a cure for ornithine transcarbamylase deficiency (OTCD), a rare urea cycle disorder. Kate’s journey began when her son, Etan, was diagnosed with this life-altering condition shortly after birth. Determined to improve his quality of life and that of others affected by OTCD, Kate transformed her personal challenges into a mission to drive change. Through Cure OTCD, Kate focuses on advancing critical research, raising awareness, and fostering patient advocacy. The organization collaborates with leading scientists, healthcare providers, and research institutions worldwide to accelerate the development of therapeutic solutions. Kate’s advocacy extends beyond her nonprofit, sharing her story and connecting with the rare disease community through her platform SaveEtan.com, where supporters can learn more, donate, and stay updated on the latest advancements in the fight against OTCD. Driven by hope and a deep love for her son, Kate continues to inspire others with her relentless pursuit of a brighter future for families impacted by rare diseases. Visit SaveEtan.com to learn how you can support this vital cause.
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    35 mins
  • EP 4 Jill Hawkins

    EP 4 Jill Hawkins
    Dec 2 2024
    FAM177A1 Research Fund is a nonprofit organization that Jill founded to support the FAM177A1 community and accelerate the development of treatments for FAM177A1 Disorder, a rare genetic disease that affects her two children, Charlotte and Cooper. As the founder and president, Jill oversees the fund's operations, fundraising, and partnerships, working with researchers, clinicians, biotech companies, and other rare disease stakeholders. She also shares her family's journey and raises awareness about FAM177A1 Disorder through various podcasts, panels, and publications. Jill has a strong background in psychology, with a bachelor's degree from the University of North Carolina at Chapel Hill and a master of education from the University of Washington. She worked as a school psychologist for several years before dedicating her time to the care of her children and the FAM177A1 Fund. Jill is passionate about improving the lives of all rare disease patients and families. She is a proud Buffalo, NY native who lives in the Pacific Northwest with her husband Doug and their three children. For more information, please visit https://www.curefam.org/
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    33 mins
  • EP 3 Carolina Sommer

    EP 3 Carolina Sommer
    Nov 15 2024
    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 mins
  • EP 2 Jeff Kramer

    EP 2 Jeff Kramer
    Nov 3 2024
    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 mins
  • EP 1 Mike Michaelis

    EP 1 Mike Michaelis
    Oct 8 2024
    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 mins