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$1,270 / $25,000 goal
"Epithelioid sarcoma is a rare, aggressive sarcoma. Little is known or understood about this disease and the prognosis is generally not very good. Current treatments are limited and often ineffective and there is no cure at this time. Your donation will directly help fund much needed research."
— Kimberly Webb

Kimberly Webb

Connor's Mom
epithelioid sarcoma family advocate

It's just a bump, a cyst, take care of it whenever you want, there's no rush, nothing to worry about ...they were wrong. 

At the age of 16, our son, Connor, was diagnosed with Epitheliod Sarcoma, an extremely rare and aggressive cancer. As I write this, I still can't believe it.  As we began this journey, we found that the nightmare was just beginning. We soon discovered that there is no cure and no truly effective treatments for this type of cancer. That being rare means there are no big parades, no rallys, and no big pharma funding research to find out how to stop this beast. But then we found hope at small, non-profit lab just outside of Portland, Oregon. 

cc-TDI, a small but mighty lab, is willing and able to take on the beast. The young, innovative team made up of brilliant scientific minds has made it their mission to find treatments that work for rare cancers like Connor's. They are his best chance in beating this. 

Please help with donating towards this important research. If you happen to work for a company that has a donation matching program, please include them as well.  

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Summary

The goal of the Pediatric Cancer Nanocourse at the Children's Cancer Therapy Development Institute (cc-TDI) is to train members of the public to beinformed liaisons between childhood cancer researchers and the community. 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 Epithelioid Sarcoma (EPS), Rhabdomyosarcoma (RMS), and Hepatoblastoma (HB)
  • 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 a network of informed and empowered advocates who can drive the cure of rare cancers

Previous course members have had their findings published in peer-reviewed scientific literature.  This year's focus is on Epithelioid Sarcoma (PES).  Speakers include:

Dr. Sheri Spunt (Stanford University), pediatric EPS clinical trials 

Matthew McBride (lab of Cigall Kadoch, Harvard), SWI/SNF complex in EPS 

Dr. Robin Jones (The Royal Marsden), adolescent & adult EPS clinical trials

Dr. Torsten Nielson (Univ of British Columbia), pathology & biology of EPS  

Dr. Charles Keller (cc-TDI), new agents to treat EPS

 

Why is this important?

Epithelioid Sarcoma is incurable if it cannot be surgically removed - yet developing new treatments requires understanding the complex genetics of this type of cancer, developing cell lines and mouse models ... which is a grass roots effort best sparked by those affected and who hope to create universally survival for all patients with EPS.  

Who will benefit?

Attendees of the Nanocourse and all children, adolescent and adults with EPS will benefit from the Research Roadmap that will be built at the Epithelioid Sarcoma Nanocourse.  

Budget

Funds will be used for speaker travel to bring EPS experts to the Nanocourse to educate patients & families. 

Updates

2017 Nanocourse roadmap on Bloom Syndrome published!

We are very excited for Zach, Paul, Wes, Mary Beth, Natalie, Jim, Anne Marie, and Talon for publishing their 2017 Nanocourse Roadmap in Cold Spring Harbor Molecular Case Studies.  This is a gifted, cohesive and progressive group of empowered families advocating for children, adolescents and young adults touched by Bloom Syndrome.  The published paper is here.