The First Stem Cell Transplanted Cystinosis Patient Returns Home!

We are excited to report that Jordan Janz, the first cystinosis patient to receive the autologous stem cell and gene therapy treatment as part of the FDA approved clinical trial, returned home to Canada. Jordan and his mom, Barbara Kulyk, lived in San Diego after Jordan was transplanted on October 7, 2019. Jordan is a true […]

Pins for a Purpose – In Honor of Isaac Andrews

Pins for a Purpose – Bowling TournamentWhen: Saturday, October 2, 2021Where: Drkula’s Bowl ( 6710 Cahill Ave, Inver Grove Heights, MN 55016)Time: 11:30am (Check-in for Moonlight bowling and silent auction), 3:00pm (Dinner) Isaac Andrews is an animated 4-year-old boy whose smile and laughter can light up a room.  Talking to him you would never know […]

2020 Natalie’s Wish Celebration

SAVE THE DATE – Saturday, April 18, 2020 Fashion Island Hotel, Newport Beach, California The Natalie’s Wish event is the most inspirational night of the year! Join us as we honor the children and adults with cystinosis who so courageously battle this disease.  We will celebrate CRF’s milestones including an update on the stem cell […]