エピソード

  • Young-Onset ALS: Diagnosis and Research
    2024/11/08
    In this episode, Gwen Petersen discusses her long journey to receiving an ALS diagnosis at age 32, her contributions to a Cytokinetics book project, and the importance of clinical trial participation. We are also joined by Merit Cudkowicz, MD, MSc, Head of the Department of Neurology, Chief of Neurology, and Director of the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital in Boston, MA who discusses the PLATFORM-ALS trial and the drugs currently in the clinical research and development pipeline.
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    20 分
  • Rett Syndrome: Magnolia and Her Family's Experience.
    2024/10/31
    AJ Tesler shares the story of his daughter, Magnolia, who is living with Rett syndrome. As a parent and caregiver, AJ provides his perspective throughout the diagnostic and therapeutic journey for Rett syndrome and is joined by Rett syndrome expert Carey Fu, MD, Pediatric Neurologist at Vanderbilt University Medical Center in Nashville, TN.
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    23 分
  • PD GENEration and Barriers to Parkinson Diagnosis - Part 2
    2024/08/23
    Richard Huckabee is a patient living with Parkinson disease and a Parkinson’s Foundation "Aware in Care" ambassador and research advocate. Mr. Huckabee is enrolled in the PD GENEration study, a national initiative offering no-cost genetic testing and counseling for people with Parkinson disease, and he discusses some of the barriers he faced in receiving a diagnosis of Parkinson disease.
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    18 分
  • PD GENEration and Barriers to Parkinson Diagnosis - Part 1
    2024/08/13
    Chantale Branson, MD, Associate Professor of Neurology at Morehouse School of Medicine, Atlanta, GA, is a researcher working on the pivotal PD GENEration study, which aims to improve treatment options through the identification of clinically relevant genes linked to Parkinson disease. In this episode, Dr. Branson provides context for the social barriers faced by people of color who have Parkinson disease.
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    19 分
  • The Influence of Family Health History on the Diagnosis of hATTR Amyloidosis
    2024/06/27
    Bernice Bennett, genealogist, health education specialist, and co-founder and faculty member of the Midwest African American Genealogy Institute, discusses the Family Health History Road Trip, which emphasizes the important role family health history can play in driving earlier diagnosis of hATTR amyloidosis. Bernice is joined by Giselle, a program participant living with hATTR amyloidosis who shares her experiences with amyloidosis and how she approached conversations with her family about this disease, as well as hATTR amyloidosis expert, Dr. Saurabh Malhotra, Director of Advanced Cardiac Imaging at Cook County Health, Chicago, IL. For more information on the Family Health History Road Trip visit https://www.hattrbridge.com/roadtrip
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    20 分
  • Beyond Brain Injury
    2024/05/02
    Elisabeth Beraquit, a Philadelphian, CPA, and former bakery owner, recounts her painstaking journey of recovery from a traumatic brain injury due to a 30 foot fall.
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    27 分
  • Surviving Stroke: 2 Surgeons Experience with Recovery
    2024/02/08
    Siva Murugappan, MD, General Surgeon, Chatham-Kent Health Alliance, Ontario, Canada, shares his own experiences as a patient recovering from an ischemic stroke. He is joined by his wife and caregiver, Dr. Prema Samy, Otolaryngologist, Chatham-Kent Health Alliance, Ontario, Canada, as they both discuss their transition from physician, to their respective roles as patient and caregiver in the recovery journey. 
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    31 分
  • Ping Pong and Parkinson Disease
    2023/12/28
    PingPongParkinson founder, Nenad Bach, discusses why he started PingPong Parkinson. He is joined by Gabe Elkinson and Ryan Dong, two high school students who started a PingPongParkinson chapter in Georgia, and Pierre Russell, a PingPongParkinson participant. 
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    31 分