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内容由n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)提供。所有播客内容(包括剧集、图形和播客描述)均由 n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen) 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal
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Sloane's Story: A Shared Medicine

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Manage episode 465120505 series 3349924
内容由n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)提供。所有播客内容(包括剧集、图形和播客描述)均由 n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen) 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

Sloane was born with a KIF1A mutation and is a special case at n-Lorem—she was the first patient to receive a medicine originally designed for someone else. Her mother, Megan, and grandfather, Tom, join the Patient Empowerment Program to share her journey and provide an update on how she’s doing six months after treatment.

On This Episode We Discuss:

  • Sloane’s KIF1A diagnosis
  • Nano-rare diseases affect the entire family
  • Sloane was able to use the same ASO as another KIF1A patient
  • Finding n-Lorem through KIF1A.ORG
  • Shocked that n-Lorem was able to create personalized treatments efficiently at cost
  • Sloane’s case is unique in a variety of ways and the decision to treat
  • How Sloane has responded to treatment
  • Are better measurements of benefit needed for nano-rare patients?
  • How Sloane has brought empathy, joy, and positivity to her family
  • Tom unretired to help fund research and support
  • The origins of ASO medicine is a long haul

Thank you to Hongene Biotech for sponsoring this patient story episode!

Make Hope Possible for nano-rare patients with a donation to n-Lorem.

  continue reading

73集单集

Artwork
icon分享
 
Manage episode 465120505 series 3349924
内容由n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)提供。所有播客内容(包括剧集、图形和播客描述)均由 n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen) 或其播客平台合作伙伴直接上传和提供。如果您认为有人在未经您许可的情况下使用您的受版权保护的作品,您可以按照此处概述的流程进行操作https://zh.player.fm/legal

Sloane was born with a KIF1A mutation and is a special case at n-Lorem—she was the first patient to receive a medicine originally designed for someone else. Her mother, Megan, and grandfather, Tom, join the Patient Empowerment Program to share her journey and provide an update on how she’s doing six months after treatment.

On This Episode We Discuss:

  • Sloane’s KIF1A diagnosis
  • Nano-rare diseases affect the entire family
  • Sloane was able to use the same ASO as another KIF1A patient
  • Finding n-Lorem through KIF1A.ORG
  • Shocked that n-Lorem was able to create personalized treatments efficiently at cost
  • Sloane’s case is unique in a variety of ways and the decision to treat
  • How Sloane has responded to treatment
  • Are better measurements of benefit needed for nano-rare patients?
  • How Sloane has brought empathy, joy, and positivity to her family
  • Tom unretired to help fund research and support
  • The origins of ASO medicine is a long haul

Thank you to Hongene Biotech for sponsoring this patient story episode!

Make Hope Possible for nano-rare patients with a donation to n-Lorem.

  continue reading

73集单集

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