April 2024 Update from the Elevate Wilms Workgroup! 

   Our Elevate Wilms workgroup has been actively working to fulfill Elevate Childhood Cancer Research and Advocacy, Inc.’s goal of saving and improving the lives of those diagnosed with childhood cancer. This workgroup includes advocates who have been directly impacted by Wilms tumor. The workgroup has an overarching goal of creating a Virtual Symposium for Wilms tumor during the winter of 2024, so they’ve been hard at work to identify important topics from diagnosis to treatment to survivorship.

–Lucy Sandeen, Elayna’s mommy and Elevate Wilms Workgroup member

   The Elevate Wilms workgroup has created this first goal to set its sights on: the important diagnosis topic of genetic testing and genetic counseling for those diagnosed with Wilms tumor.

Improve the numbers of kids diagnosed with Wilms receiving a referral for Genetic Testing at Diagnosis.

   Committed to high quality information and collaboration across stakeholders, the group initiated a conversation with Dr. Jack Brzezinski, of Toronto SickKids, a leading bench to bedside oncologist focused on the genetics of Wilms tumor. The Elevate Wilms workgroup prepared for the meeting by reading important scientific articles on the topic of genetic predisposition for Wilms tumor and then invited Dr. Brzezinski to meet with them. In addition to Dr. B, the group was excited to have the chance to meet with a genetics counselor from Toronto SickKids, Rosemarie E. Venier . The group met for an hour, engaged in feisty and respectful conversations, gained knowledge and a new relationship with Dr. Brzezinski, who has agreed to participate in our Elevate Wilms Virtual Patient/Caregiver Symposium! 

   After the meeting, the Elevate Wilms workgroup created a couple of goals around this diagnosis topic: 

1) Bodacious Goal: Change the current standard of care protocol to include an offer of genetics counseling and testing for newly diagnosed kids with Wilms tumor.

2) Short-term Goal: Improve clinician rate of referral for genetic testing.

3) Get information directly into the hands of Wilms tumor patients/caregivers through a blog AND make this a topic in our Winter 2025 Wilms tumor Patient/Caregiver Virtual Symposium.

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   In the process of reaching out to scientists and oncologists to create high quality programming, members of the group have been invited to attend the 12th International Pediatric Renal Tumor Symposium at MSK in New York City! Participants of the workgroup have a desire to make measurable changes and improvements for those diagnosed with a Wilms tumor. So, when they found out there was an option to submit a scientific poster for the event, they got busy coming up with a plan! While we hope the poster is accepted, we realize that the process of creating the poster, which intends to create an open dialogue about the best way to create a multi-stakeholder initiative for Wilms tumor, is a huge step forward for the group! 

 Learn more about the 12th International Pediatric Renal Tumor Symposium HERE.

Want to learn how you can help? Keep reading!

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These are just a few of our Elevate kids, Roberto and Emmie, that were all diagnosed with Wilms tumor and needed more effective, less toxic treatments. They are part of our ‘why‘.