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Could This Be The Cure?

Jordan Janz and Natalie Stack Cystinosis Research Foundation

The early results are in and the news is promising! Jordan Janz was transplanted on October 7, 2019. Since that time, he has not had any cysteamine treatment. The results at three months show a dramatic reduction in Jordan’s cystine levels which is the key measurement of cystinosis. The genetically repaired cells are doing their job! This is incredible news and we are optimistic this trend will continue. Our community thanks Jordan for being the first patient to undergo the treatment. Because of Jordan’s bravery, we are celebrating this historical news today. We thank Stéphanie Cherqui, PhD at UC San Diego for her commitment to our adults and children with cystinosis and for working every day to find a cure. Thank you to our family and friends who have supported the research and who never doubted that this day would come. Most of all, we thank our children and adults with cystinosis who inspire us every day to live life with joy and hope.  We have reached this milestone together and we are soaring!

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