JEDIs for Survival funds Dr. Michael Ortiz at MSK Kids

Cycle for Survival funds raised by the foundation’s JEDIs for Survival teams and community of donors supports the work of Memorial Sloan Kettering pediatric oncologist Dr. Michael Ortiz. Dr. Julia Glade Bender, Vice Chair for Clinical Research at Memorial Sloan-Kettering Cancer Center and JEDI Medical Advisor, recommended the work of Dr. Ortiz who specializes in caring for young adults children with rare and high-risk childhood solid tumors, particularly cancers of the kidney and liver including Wilms Tumor. 

Support from the Jed Ian Taxel Foundation will be used to support a multi-center phase 2 clinical trial of Selinexor in children, adolescents, and adults with advanced solid tumors, specifically evaluating how well Selinexor treats cases of advanced WT, MRT, MPNST, and other rare solid tumors that we believe may benefit from XPO1 inhibition. Selinexor is the first drug developed to block Exportin 1 (XPO1), a protein pump on the surface of the cell’s nucleus, was a unique weakness in several rare and generally childhood-onset solid tumors, including Wilms tumors (WT), malignant rhabdoid tumors (MRT), and malignant peripheral nerve sheath tumors (MPNST). 

Prior trials did not offer a liquid option for young children; therefore, they were not able to be treated with Selinexor since they could not swallow tablets and tablets could not be crushed.  Selinexor has now been studied in several thousand cancer patients, including multiple studies in children with cancer, so a safe dose to administer to children has been established.  

Foundation funds will also be used to expand the study into a multicenter format, with plans – contingent upon sufficient funding  –  to open at four large programs in Atlanta, Boston, Cincinnati, and Los Angeles.Together we are making progress possible and every single gift makes a difference.

Two daughters with rare cancers. Two stories of hope.

Caroline with Mom & Dad at Cycle for Survival 2018
Caroline with Mom & Dad at Cycle for Survival 2018

Debbie: Caroline and Dr. Ortiz

Kevin and I are SO grateful that you are allocating the Cycle for Survival funds to Dr. Ortiz. As you know, all pediatric cancer is “rare” even though every day, 43 kids in the U.S. are diagnosed with it. Wilms Tumor (kidney cancer) is unusual even among uncommon cancers – it accounts for only about 5% of all the cancers children face.

Meeting a bright and dedicated doctor like Dr. Ortiz who was focused on Wilms was so encouraging for us when our daughter Caroline was diagnosed with Stage 4 bilateral Wilms Tumors with lung mets. With just 500 to 600 new cases in the United States every year … it’s not enough for a pharmaceutical company to fund a new targeted drug yet there are a lot of families going through hell. Dr. Ortiz knew no pharmaceutical company would fund a new drug for such a small group, so he focused on finding adult cancer drugs that could be repurposed to fight Wilms. My husband and I immediately appreciated how practical and resourceful he is.

After two years of difficult treatments and four years of periodic scans, Caroline officially became a cancer survivor in February 2022. We are so grateful for her health but also heartbreakingly aware of the range of outcomes for pediatric cancer diagnoses. This is why I am a volunteer at MSK, and why the legacy I want to leave is better outcomes for children with cancer.

Lyyli and Dr. Ortiz with Nurse Talia

Alexandra: Lyyli and “Mikey”

There isn’t really a way to describe “Mikey,” as my 9-year-old daughter Lyyli calls him. He might be the kindest man on earth. When he is with you, there is no sense he has any other patients at all. His level of caring, his nuance of emotions, his mind … he really wants all parents and kids to understand the science, what is happening.

Dr. Ortiz’s patience in explaining and then explaining over and over again is amazing. He will answer questions forever. He uses a kidney pin to walk you through everything visually. He would be a most excellent professor. He seems to never go home, as he is there first thing in the morning, late at night, and even on summer weekends of endless chemo when you feel like you’ve been forgotten by the world. He is charming and comforting and deeply human.

Dr. Ortiz works hard to understand his kids – Lyyli gave him so much grief at first (feisty girl!) and he seemed to love it, changing tactics and approaches to win her over. He makes sure to match families with a nurse practitioner who suits them best. He’s an ace at telling who will go best with whom. Talia, pictured here, is a rock. All of the nurses on 9 adore him and say he is the best. He engages with each child’s life directly to make sure his kids are being taken care of in all ways. Lyyli has come around to him and even asked for a hug at her 6-month scans – all clear!

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More healthy survivors, less family heartbreak

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