Patient Perspectives

The following publications were written by parents David and Sally Wray. David and Sally’s son Andrew (11/07/1991–29/08/2000), was affected by Niemann-Pick type C. They decided to share their valuable experience of the disease to further understanding and knowledge of the effect such a diagnosis can have on the child and family. David and Sally candidly offer their thoughts, advice and experiences in the hope that their contribution will lead to improvements for other families coping with Niemann-Pick diseases:

• Andrew A Journe by David and Sally Wray
• Louise: Sibling of Andrew by David and Sally Wray

Patient Perspectives:

• Meghann Ferguson – Family Journey
• Barbara Lazarus – Family Journey
• Ashley Lewis – Family Journey
• Amy Pender – Family Journey
• Krystal Samuelson – Family Journey
• Niemann-Pick Type A Patient Journey – Sams Story
  
• JJ’s Story: Living with ASMD
• NP-B Patient Journey – Praying for a Cure
• NP-B Patient Journey – James Story
• Hollie’s NP-C Journey
• Niemannki: O MOIM BRACIE

Parent’s Perspectives:

• Sue and Geoff Whyler’s Story
• Louise Wray’s Story
• David Wray’s Story
• Dana Smith’s Story
• Patient’s Perspective of Phase 1b trial of rhASM for ASMD NP-B

Extraordinary! A Book for Children with Rare Diseases