Elsinosis: Living with Cystinosis
A real life account of beautiful Elsie and how she lives with cystinosis
I can't believe that this moment is finally here but it really is! The book that Amanda Leigh (author of Scarred, My Heart is Yours) and I have been working on, Strength: Lives Touched by Cystinosis is available now. It started as an idea I put out in one of the cystinosis support groups on Facebook, wondering… Continue reading Strength: Lives Touched by Cystinosis is here!
For about the past year and a half I've been working with Amanda Leigh, author of the books Scarred, My Heart is Yours and some great poetry collections, on an anthology of stories from the cystinosis community. We've collected stories from people all over the world whose lives have been affected in one way or another… Continue reading Strength: Lives Touched by Cystinosis Cover Reveal!
Every two years the Cystinosis Research Network holds a family conference where families can get together for a few days, attend the many information sessions by leading experts in cystinosis patient care and children, teens and adults alike can have some fun. Sadly we have not had a chance to attend one of these conferences… Continue reading Dream, Achieve, Inspire
Elsinosis: Living with Cystinosis 