The Third Patient Was Transplanted November 16, 2020!

From Rocky Seachord, Jacob’s Mom:
“He is in very good spirits and I think it is a good omen that he is in the very same room that Jordan was in… The transplant, considered Day 0, is Monday the 16th. This will be his new birthday. I can’t even imagine the possibilities in his life after that point.” 

History was made again in the cystinosis community.  We are very excited to share that yesterday, Jacob Seachord, was the third patient to receive the stem cell transplant therapy.  The treatment, developed by Stéphanie Cherqui, PhD at UC San Diego, is anticipated to be a one-time treatment that we hope will stop the progression of cystinosis or be the cure.  In 2018, the FDA approved the clinical trial for six patients to test the safety and efficacy of the stem cell treatment.  Since 2007, CRF has proudly supported Dr. Cherqui’s groundbreaking research. Thanks to the dedication and generosity of our CRF friends and family from around the globe, CRF has funded nearly $6 million in grants to Dr. Cherqui for this study.

Jacob, like Jordan Janz and patient #2 before him, is a true pioneer in our community. Participating in the stem cell trial requires determination and commitment. In light of the pandemic, that resolve requires even more commitment because Jacob must remain in isolation while going through the transplant.  His parents, Rocky and Mike, are not allowed to visit Jacob while he is in the hospital – thank goodness for FaceTime and Zoom! They will see him in person when he is ready to start recovering at the hotel apartment in San Diego in about 3-4 weeks. Although Jacob cannot physically be with his parents or have visitors yet, we want him to know that we are surrounding him with warm, positive thoughts, lots of love, strength, and many prayers.

We are grateful to Jacob for his courage to participate in the trial and to share his story with us.  Every patient who volunteers for this trial is paving the way for our community of children and adults with cystinosis by giving them the greatest gift of all, hope for a brighter future.

Thank you Jacob, Rocky, and Mike for allowing us to be part of this new chapter in your life. We will keep Jacob in our prayers as he begins the healing process over the next several months.

With gratitude and love,

The CRF Community

Together, we shine bright!