On Sunday, June 23, we are participating in the 9th annual Summer Scamper to raise funds for Schimke Immuno-Osseous Dysplasia research at Lucile Packard Children’s Hospital Stanford!
Please join us virtually or at Stanford on race day! How do you participate virtually? Simply join our team & run in your town on race day.
It was a 1 in 80 million chance Kruz and Paizlee would have SIOD. Schimke Immuno Osseous Dysplasia (SIOD) is a multisystem disorder that is inherited in an autosomal recessive pattern. Kruz and Paizlee are 2 out of 5 SIOD cases in the United States, making them the first siblings with this condition in the country. The life altering disease expresses itself in many ways, first being kidney failure. Kruz (and Paizlee) will undergo a kidney transplant. Kruz is already on dialysis and Paizlee is being monitored and treated by Stanford nephrology team now. Another way SIOD expresses itself is T cell deficiency. Kruz was recently the first SIOD patient to have an allogeneic hematopoietic stem cell transplant here at Stanford. Paizlee is undergoing evaluation for her stem cell transplant in the near future. SIOD will involve transplants such as kidney, stem cell and even hip reconstruction due to the dysplasia, but the ultimate goal of research would be reversing the SMARCAL1 mutation or a drug therapy that causes other havocs of the body such as stokes, seizures, and chance of cancers. Kruz and Paizlee are trailblazers in SIOD research. Kruzn For A Kure Foundation is providing life saving research funding to allow these children to have a treatment plan and a change at longer life living with such a devastating disease. For the first time, SIOD research has a promising chance to actually cure this incurable disease at Stanford. We strive everyday to not only give Kruz and Paizlee a promising life, but the other children all over the world a chance as well. Continued funding is paramount for such an extremely rare condition. Your support, saves precious lives.