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"For adolescents and young adults, clear cell sarcoma represents a life interrupted --- with few options other than surgery. We're here to change all that in active partnership between community and medical/scientific experts!"
— Charles Keller MD, scientific director, cc-TDI.org

Charles Keller MD

Scientific Director
Children's Cancer Therapy Development Institute

Everyone deserves science-justified hope.  No cancer is too rare to systematically uncover how it works and how to stop it.  We can change history when we have the right stakeholders.  Patients and families are those stakeholders, and they deserve to be empowered partners in the search for a cure. 

 

Lissett Bickford PhD

Instructor

As the newest lab member at cc-TDI, I began research on clear cell sarcoma in late November of 2018. My immediate goal is to collect as many cells and tissue samples as possible from patients who have had clear cell sarcoma. In order to do this, I have contacted researchers from all over the world and am developing a clear cell sarcoma tissue ‘bank’ so that we can sequence all of these samples to look at what mutations they have. Recently, we also identified a panel of several drugs of interest that we think will have activity for clear cell sarcoma and my next goal is to test the efficacy of these drugs against all possible clear cell sarcoma cell lines. As of today, there is no real standard of care for clear cell sarcoma beyond surgery and our goal is to change that.

I’m very excited to participate in research that is so patient-focused, with real potential to actually impact lives. The work I am doing is very important to me personally, as I interact regularly with people who would be directly impacted by my research. Unlike other research projects I’ve had in the past, I feel deeply connected to the patients I am working for.

I finally had the opportunity to personally meet with Lennie and Denny Woods, the founders of Sara’s Cure, and this research would not be possible without them. I am especially grateful for their support!

Lennie Woods

'Doctor Mom'

SARA’S STORY WRITTEN BY HER MOM, LENNIE WOODS…

Sara’s story begins on a mission trip to rural Guatemala, where she began experiencing an excruciating stomach pain that local doctors could not treat. After a middle-of-the-night emergency ride on grueling back roads through areas known for drug trafficking and extortion or worse. Sara and her mother made it to the hospital in Guatemala City. Sara underwent immediate surgery to remove a malignant tumor from her intestines.

A lot happened since then ... care at some of the leading cancer centers in North America ... and a realization that chemotherapy nor radiation have been proven to do any good. Possibly the opposite. So Sara’s only hope is resection if and when it returns or a targeted therapy that can silence the mutation so her own immune system can keep her healthy.  Science is moving rapidly in this direction of immunotherapy and fastest for the more common types of breast, lung and colon cancers.  The same mutations are many times found in Sarcoma like Sara’s but it is low on the research priority list.

This is where we need your help.  We are working with a researcher to fund work strictly on the EWSR1-ATF1 gene fusion as it relates to the GI tract. Obviously we need a roadmap -it’s vital, and that's why we're bringing patients and the world's medical and scientific experts on clear cell sarcoma to Portland for the week of August 12-16, 2019. It’s there we will find a cure for Sara and many others that suffer with these orphan tumors.

 

photo credit, Post and Courier

Summary

What is a nanocourse, anyway?  A nanocourse is a dynamic approach to teaching advanced scientific topics in a condensed fashion. Put simply: our nanocourse is a crash course in pediatric cancer. Features of the course will include:

  • A didactic overview of childhood cancer treatment, biology, pathology, and clinical trials
  • An introduction to the scientific research process: how research works, what barriers exist, and how to overcome challenges and make progress on rare childhood cancers
  • Lectures on Clear Cell Sarcoma and other EWSR1-related tumors.
  • Daily mentorship and hands-on opportunities to shadow our research scientists in the laboratory
  • A self-selected group research project, with the opportunity to collaborate with fellow participants 
  • The opportunity to build network of informed and empowered advocates who can drive the cure of rare cancers

Previous course members have had their findings published in the peer-reviewed scientific literature. There is no cost to attend the course, but participants are required to cover their own travel, lodging, and meals.  The actual costs of putting on the Nanocourse will be paid from this crowdfunding project.  

Why is this important?

The goal of the Pediatric Cancer Nanocourse is to train members of the public to act as informed liaisons between childhood cancer researchers and the community. 

Who will benefit?

Patients, Families, Physicians and Researchers will all benefit from the cross-disciplinary workshop of stakeholders!

Here are our speakers:

 

CCS - EWSR1 Lecturers:

Agnieszka Wozniak (KU Leuven), CCS Clinical Trials

Jeff Toretsky (Georgetown), Ewings Family Tumors Overview: clinical, biology, translation

Paul Huang (ICR London), Sarcoma Proteomics

Kevin Jones (Univ of Utah), Mouse Models of CCS

Tyuji Hoshino (Chiba Univ), Drug Design

Speaker TBA (Nurix Pharmaceuticals), Programs in Proteome Therapeutics

Xiangshu Xiao (OHSU), Development of 666-15

Michael Cohen (OHSU), EWSR1 drug development

Charles Keller for Lissett Bickford (cc-TDI), Systems Biology to develop CCS Therapeutics

 

Other Invited Lecturers:

Molly Lindquist (Consano.org), crowdfunding for biomedical research 

Ganapati Srinivasa (OmicsAutomation; Intel Collaborative Cancer Cloud, genomics

Tommy Pham (Nike), industry partnerships

Budget

The budget includes speaker travel expenses, meals at the Nanocourse and research support costs for the course and experiments in the lab.  For example, attendees will test multiple new drugs on clear cell sarcoma cell lines, in real time!