So guess what? After working on this project for over a year it is finally out!! The owner of the blog Elsinosis: Living with Cystinosis (her name is also Amanda) and I partnered up on this project back in the very beginning of 2016. Amanda’s daughter also has cystinosis.
Our plan was to have people from the cystinosis community come together to share their stories in one book where all of the proceeds would be donated to the Cystinosis Research Network. Cystinosis is a rare, genetic, metabolic condition that I myself also have.
This book has true stories from people within the cystinosis community. Those with cystinosis as well as caregivers, friends and family. There is even a forward written by a doctor who has treated cystinosis.
We would appreciate your support on this project so much. It is very near and dear to our hearts. Please consider helping us out with this project. Even if you can’t buy the book, sharing the news and link would be a huge help. Thank you so much. ❤