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 pioneer and hero to our community. He is doing well and is getting stronger every day. We are all eternally grateful to Jordan for his sacrifice and his courage. The clinical trial is a result of years of research conducted by Stéphanie Cherqui, PhD at UC San Diego. CRF has proudly funded Dr. Cherqui’s stem cell work since 2007.
Today we celebrate the hope that the stem cell treatment will stop the progression of cystinosis or be the cure. We thank Dr. Cherqui for her groundbreaking work, we thank Barbara for her commitment to the trial and to taking such good care of Jordan (as only a mother can do!) and we wholeheartedly thank Jordan for chartering the unknown and risking so much to give us the greatest gift of all, hope for a cure.