QUARTERLY UPDATE | News for Donors, Sponsors, Patients, Doctors, and Hospitals • The Jed Ian Taxel Foundation for Rare Cancer Research 

JEDIs for Survival team exceeds fundraising goal – thanks to YOU!
Congratulations to our JEDIs for Survival national team members and all the generous donors who helped make our foundation’s inaugural Cycle for Survival fundraising effort a success. 

Together, we raised $158,805 for rare cancer research.
Our foundation sponsored 6 JEDIs for Survival team captains who recruited 63 riders and 532 donors – and we matched the first $10K raised by each team. 100% of every dollar raised goes directly to groundbreaking rare cancer research and lifesaving clinical trials for cancer research at Memorial Sloan Kettering Cancer Center (MSK), benefiting people worldwide.

Today and every day, we are grateful for all that your philanthropic support has helped us accomplish. Every gift you give furthers the foundation’s mission and allows us to set ambitious goals as we work toward a more hopeful future for people with rare cancer and their families. 

Meet Dr. Michael Ortiz
and his lifesaving cancer research.
$158,805 in funds raised by our JEDIs for Survival team at Cycle for Survival support the work of Memorial Sloan Kettering pediatric oncologist Dr. Michael Ortiz.
Before directing foundation donations raised at Cycle for Survival 2022, we sought the advice of Julia Glade Bender, MD, Vice Chair for Clinical Research at Memorial Sloan-Kettering Cancer Center. Julia recommended Michael Ortiz, Memorial Sloan Kettering pediatric oncologist who specializes in caring for children and young adults with rare and high-risk childhood solid tumors, particularly cancers of the kidney and liver including Wilms tumors. 

An active member of the pediatric sarcoma team at MSK Kids in New York City, Dr. Ortiz participates in clinical care and translational research and has led several early phase clinical trials of novel agents including the TPO agonist Romiplostim (NCT04671901), the GPC3 antibody Codrituzumab (NCT04928677), and the ATR inhibitor Elimusertib (NCT05071209), leveraging genomics and proteomics to develop safe and effective rationally targeted therapies.  

Cancer is personal. Science requires creativity. Innovation comes in many forms. Upon learning of Dr. Ortiz and his research, we learned of a personal connection to Dr. Ortiz. Tiffany Taxel and Debbie Bhatt went to middle and high school together and have been dear friends for many years including with Jed and Debbie‘s husband Kevin. When our family was struggling through Jed’s battle with cancer, Tiffany's friends faced a similar struggle at the same time. In 2016, at the age of 3, Debbie and Kevin’s daughter Caroline was diagnosed with Stage 4 bilateral Wilms Tumors (kidney cancer) with lung mets.

Together we are making progress possible and every single gift makes a difference. Join us as a donor.
Two daughters with rare cancer.
Two stories of hope. 
Debbie Bhatt:
Caroline and Dr. Ortiz 

Kevin and I are SO grateful that the foundation is allocating 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 among uncommon cancers - it accounts for 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. 
Alexandra Zissu:
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 kidsLyyli 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!
October 16, 2022
JEDIs for Survival 2022 Achievement Awards Dinner
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The Jed Ian Taxel Foundation for Rare Cancer Research, Inc. is a 501(c)(3) Nonprofit Organization, accepting Tax Deductible Donations from individuals, corporations, family-advised funds, and foundations. Federal Tax ID 86-261081