Final Report: Studies Using Zebrafish Models by Dr. Chen and Dr. Devuyst

Olivier Devuyst, MD, PhD, and Zhiyong Chen, PhD, University of Zurich, Switzerland That fish in your aquarium is becoming a fighter in the battle against cystinosis! Drs. Chen and Devuyst have used zebrafish, also called “zebra danio” at your local pet store, to create a new cystinosis animal model. These fish will be used for […]
Research for Ocular Cystinosis by Dr. Morgan DiLeo and Dr. Xin Fan

Morgan DiLeo, PhD, and Xin Fan, PhD, University of Pittsburgh, Pennsylvania CRF continues to partner with Dr. DiLeo, whose exciting work is paving the way to a better treatment for ocular cystinosis. The study by Dr. Morgan DiLeo is focused on a sustained-release drug delivery mechanism. This mechanism has the goal of replacing the hourly […]
CRF Research Helps Other Diseases and Disorders

Stéphanie Cherqui, PhD, Awarded $4.8 million CIRM Grant for Friedreich’s Ataxia We have always known that studying a complicated disease like cystinosis would lead to discoveries in other more prevalent diseases and disorders. On November 29, Dr. Cherqui, a professor, in the Department of Pediatrics at the University of California, San Diego, (UCSD), was […]
Tuesday November 29, 2022

Donate to CRF today and your donation will have twice the impact to help cure cystinosis! The mission of the Cystinosis Research Foundation is to support basic, clinical, and translational research for better treatments and a cure. Today, because of your generosity and support, CRF is the largest private fund provider of grants for cystinosis […]
Research Progress Report by Bruno Gasnier, PhD, Paris University/CNRS)

CRF has provided over $1 million in research funding to Dr. Gasnier since 2007. In the fall of 2021, Dr. Gasnier was awarded a new grant to research the critical role of cystinosin during embryo development. This is the first progress report for this important project. A Critical Role for Cystinosin During Embryo Development. Cystinosis […]
Research Progress Report by Stéphanie Cherqui, PhD, University of California, San Diego and Corinne Antignac, MD, PhD, Imagine Institute, Paris, France

CRF awarded a research grant in 2017 to Stéphanie Cherqui, PhD, Professor, Department of Pediatrics, at the University of California, San Diego, and Corinne Antignac, MD, PhD, Professor, Laboratory of Hereditary Kidney Diseases, at Imagine Institute, in Paris. The study was designed to gather intra-dermal images of the skin from patients with cystinosis through confocal […]
Research Progress Update by Morgan DiLeo, PhD, University of Pittsburgh

Morgan DiLeo, PhD, Assistant Professor, and Ken Nischal, MD, FRCO, Professor, Chair of Pediatric Ophthalmology at the University of Pittsburgh, received their most recent grant award in spring 2020 for their work to develop a controlled release cysteamine eye drop. CRF has supported and funded their important research for corneal cystinosis since 2016 with $880,258 […]
The Third Patient Was Transplanted November 16, 2020!

From Rocky Seachord, Jacob’s Mom: “He is in very good spirits and I think it is a good omen that he is in the very same room that Jordan was in… The transplant, considered Day 0, is Monday the 16th. This will be his new birthday. I can’t even imagine the possibilities in his life […]
Research Grant Progress Report by Liang Feng, PhD, Stanford University

Researcher Liang Feng, Associate Professor of Molecular and Cellular Physiology at Stanford University, and Research Fellow Xue Guo received a grant award in 2020 to continue their work on the Molecular Mechanism of Cystinosis. The objectives of this study are to understand several key aspects of how membrane proteins that have important implications in cystinosis […]
Stem Cell And Gene Therapy Webinar Update Video Now Available!

Stem Cell and Gene Therapy Trial Update with Dr. Stéphanie Cherqui, Jordan Janz, and Barb Kulyk Presented Tuesday, October 27, 2020 We had a record of 309 people participating from 20 countries around the world. The participants represented the myriad of people in our community; adults with cystinosis, parents of children and adults with cystinosis, […]