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Susannah's Progress: Two Years of ASO Treatment with Dr. Jennifer Bain and Luke Rosen
Manage episode 445408999 series 3349924
المحتوى المقدم من 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). يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة 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) أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
Two years of treatment—two years of strength, courage, and blazing a trail for other nano-rare patients! 🎉 Susannah's story was the first shared on the Patient Empowerment Program podcast. Now, two years later, her father, Luke Rosen, and her physician, Dr. Jennifer Bain, detail Susannah’s remarkable progress since beginning regular treatments—highlighting improvements in her motor skills, cognition, energy, and more!
Susannah's Story (May 25, 2022)
2024 Nano-rare Patient Colloquium
On This Episode We Discuss:
- 3:10 Susannah's KIF1A mutation
- 5:50 Luke and his wife Sally changed their careers to help find a treatment for KIF1A
- 7:23 How Susannah's family first heard of n-Lorem
- 8:43 Jen on the Columbia University Medical Center team and the decision to treat Susannah
- 12:25 Luke's experience bringing his daughter to receive an experimental ASO treatment for the first time
- 14:30 The positive outcomes and observations of Susannah's treatment
- 26:15 What Dr. Bain has learned since treating Susannah
- 29:15 Luke on the impact and importance of the little things
- 31:15 Advice to other parents
- 35:40 Being part of a community of nano-rare patients and families
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