Zoe Solsby

CRF has supported Dr. Hahn’s important research since 2017, awarding $234,458 for his research on Newborn Screening.  The aim of the study was to develop and validate a specific and quantitative assay for newborn screening of cystinosis. Objective/Rationale Newborn screening (NBS) has proven to be highly effective at reducing healthcare costs, improving outcomes, and avoiding

I definitely feel better today than when I had cystinosis. In the mornings I can go a couple of hours or so without eating and still feel fine, whereas before the transplant if I didn’t eat something as soon as I got up, I would feel very sick. I definitely don’t feel as sick all

CRF has supported Dr. Feng at Stanford University since 2015, awarding him $525,000 for his important research on the Molecular Mechanisms of Cystinosis. The goal of the study is to decipher the membrane transporters found on lysosomes that play critical roles in the pathogenesis and therapy of cystinosis.  Download Dr. Feng’s final progress report for

Evaluation of Ctns-/-Mice Protection by Oral Supplementation with Basic Amino-Acids:  Focus on Kidneys – Extension to Another Colony Since 2016, CRF has supported Pierre Courtoy MD, PhD, and Christophe Pierreux, PhD, with $504,728 in grant funding for their important research studies at the de Duve Institute in Brussels, Belgium. Despite the challenges with Covid-19, they

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,

Developing A Therapeutic Strategy For Cystinotic Nephropathy With iPS Cells CRF has supported Dr. Freedman since 2018, awarding $392,316 for his important study at the University of Washington Medicine/Nephrology, using human induced pluripotent stem (iPS) cells and derived kidney organoids to develop therapeutics for cystinotic nephropathy.  His August 2020 report outlines the progress he has

2020 Spring Grants Announced This past Spring, CRF funded 10 new grants, 4 research grant extensions, and 1 lab equipment grant, totaling more than $2,629,490  for cystinosis research. And since 2003, CRF has funded 200 multi-year grants in 12 countries which has made CRF the largest funder of cystinosis research in the world.  Thank you