Elevate Wilms
12th International Pediatric Renal Tumors Biology Meeting
“Five years ago I was sitting across from the oncologists,
today, I sit with them.“
– C. Comer MTS, BSN, RN,
Mike Ortiz, MD and Robyn Spoon, Elevate CEO
Great things that happened in New York to make a difference for Wilms tumor. Elevate Wilms members, including Miriam Weiss, MD, Courtney Comer, MTS, BSN, RN and Robyn Spoon, Elevate Founder and CEO, attended the 12th International Pediatric Renal Tumors Biology Meeting for three straight days of networking and learning.
Want to hear more?
Robyn Spoon, Elevate CEO will share a snapshot of what happened over these 3 days…
UPDATES!
1) We received the most updated information regarding the release of the next COG clinical trial information for those diagnosed with Wilms tumor from pediatric oncologist Elizabeth Mullens, MD, FAAP of Dana-Farber Cancer Institute of Boston, MA. [HERE]
2) We received the most updated information regarding the release of the next SIOP trial from Marry van den Heuvel-Eibrink, MD of Prinses Maxima, Netherlands [HERE].
3) Elevate learned that SIOP and COG are finding some common ground through the HARMONICA collaboration.
This is great news!
4) We received updated information regarding the current state of needs from scientists and translational doctors.
Why is this important?
This will be key to help Elevate identify “pinch points” we wish to address. Our team will be working on this together beginning this Wednesday at the Elevate Wilms workgroup meeting.
What else happened over those few days?
Critical relationships were fostered between our organization and leading scientists and translational doctors, which I believe will help us be more effective in accomplishing our mission! Some of those relationships include: Dr. Mike Ortiz of Memorial Sloan Kettering [HERE] -who has offered to connect us with whoever we need, Dr. Andrew Murphy, surgeon at St. Jude’s [HERE], Dr. Elizabeth Mullen, Dr. Andrew Hong of Children’s Healthcare of Atlanta [HERE], Dr. Jeffrey Dome of Children’s National [HERE], Dr. Marry van den Heuvel-Eibrink and her team, etc. We had the chance to be reacquainted with others, such as Dr. Brian Crompton of Dana Farber [HERE], Dr. Filemon Dela Cruz of Memorial Sloan Kettering [HERE], and Dr. Jack Brzezinski of Toronto Sick Kids [HERE]- Elevate Wilms was thrilled to meet him face to face at this event after our introductions a few months ago.
I was excited to have the opportunity to spend a lot of quality time with Dr. Martha Donaghue of the FDA [HERE], whom I had previously met at ACCELERATE in February. She is a wonderful advocate for “advocacy” and was impressed with our “model” for engagement [Stay tuned for more on this in future blogs]. Along with Martha, I enjoyed learning more from Nita Seibel from the NCI [HERE]. Both of them will be wonderful people to have in Elevate’s realm as they are willing to provide training opportunities and speak at events, and more!
One of the most exciting parts of the symposium for me was the introduction to early career scholars within Wilms, I feel these individuals are the “future”. They are identifying potential targets for targeted opportunities and working on developmental biology that may unlock the clues for a brighter future for this disease.
I also felt grateful to be welcomed and empowered by speaking on behalf of advocacy during the Discovery of Improved Wilms Tumor Therapeutic Targets and Approaches breakout session. I assured all of those in attendance (packed room that sat 105), that we are ready to help break down barriers, raise funds, and advocate as needed for these new therapies.
An additional surprise was an introduction to the new science director, Salvatore La Rosa, PhD, for the Kidney Cancer Association [HERE]. We are working on setting up a time for a short chat. At some point, it may be interesting for him to join one of our Elevate Wilms workgroup meetings. He seems very motivated to support pediatric kidney cancers…keep in mind: he used to advocate for peds through the national tumor foundation.
——————————
Elevate is humbled by those willing to share their children’s faces, names, diagnoses and personal connections to kidney cancers through efforts at this event.
We are grateful for those working hard within the Elevate Wilms workgroup and were able to submit a scientific poster during this international science event. We look for sharing more on this roll that furthered relationships and ‘elevated’ Wilms in the process! Together, we will reimagine treatments for those diagnosed with Wilms tumor!
To gain a complete overview of the event, check out this brochure from the conference: PedsRenal2024_Brochure
Explore the Elevate Wilms workgroup
What are we doing?
“Elevate workgroups are the core of Elevate Childhood Cancer Research and Advocacy, Inc.” – Chris Osborne, Elevate Board Chair
Elevate Wilms is a part of the advocacy committee within Elevate Childhood Cancer Research and Advocacy with two main priorities:
1. Create useful educational materials and programs to help
families better advocate within the medical system on behalf of their child
AND
2. Enable patient/advocates and caregivers (PACs) to instigate improvements
in therapy development for children diagnosed with cancer
Elevate is reimagining treatment for those diagnosed with childhood cancer, like Wilms tumor and we need your help. Our efforts will collectively build a brighter and healthier future for our children by building a roadmap to discover more effective, less harsh treatments.
Elevate Wilms Workgroup Update
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.
In addition to this, tomorrow, members of this group that attended the 12th International Pediatric Renal Conference, will update the entire Elevate Wilms workgroup so we can collectively lay the course for the next steps! This group is not only working behind the scenes but moving forward and making the needed connections through educated advocacy! Stay tuned! It’s about to get really interesting…
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