October 7, 2019 was a day that will forever be remembered as a historic day for adults and children with cystinosis and their families. It’s a day that could very well mark the beginning of a world without cystinosis. Jordan Janz, age 20 from Consort, Alberta, was the first patient to receive a genetically modified autologous stem cell transplant for cystinosis. Jordan is a true pioneer in our community, and we are incredibly grateful to him for his courage to be the first cystinosis patient to undergo the treatment. Jordan’s bravery has paved the way for all future cystinosis patients who will be part of this trial. We are all thankful to Jordan and his family for their gift of hope and promise to our community. We still have many months to wait before we know how the treatment is working and if it will be a lasting cure, but we are hopeful and optimistic that it will be.
If you are moved by Jordan’s story of hope and would like to participate in showing support, we encourage sharing messages of love and strength to help his road to recovery. At this time, Jordan is unable to receive gifts or cards as he is in a sterile environment. However, cards and or gifts may be sent to Jordan in c/o CRF 19200 Von Karman Avenue, Suite 920 Irvine, CA 92612 and we will deliver them to Jordan and his family or forward them on to his mom, Barb Kulyk. We know every card and message will brighten his day.
If you are an adult with cystinosis and are interested in participating in the trial or would like more information, contact Laura Hernandez lhernandez@ucsd.edu.
