See also our related blog for the Pediatric Preclinical Testing Initiative.

Thursday, October 27, 2011

CTOS - Second International Conference on Sarcoma Biology

It has been a productive set of tandem meetings.  Charles presented an opening evening session talk at the Second International Conference on Sarcoma Biology on the cell of origin of embryonal rhabdomyosarcoma and undifferentiated sarcomas, while OHSU & the Pediatric Cancer Biology Program have had 3 well-visited posters (including one co-authored by Melissa Hill and our colleagues at the Northwest Sarcoma Foundation).

Friday, October 21, 2011

The Wayman Tisdale Story (osteosarcoma,basketball & jazz)


Reposted from the Scott Carter Foundation website as written by Amanda
Hollywood is coming to Holland Hall! On Saturday, October 29, 2011 the world wide movie premiere of the “The Wayman Tisdale Story” will take place at the Walter Arts Center at Holland Hall. The film celebrates the life and legacy of three time All-American, Gold Medal Olympian, NBA Star, World Renowned Jazz musician and Tulsan, Wayman Tisdale. The event is free and open to the public.
The Wayman Tisdale Story” features never before seen interviews with Wayman Tisdale as he tells his own life story from childhood to his battle with Cancer. The film also features interviews with Michael Jordan, Sam Perkins, Toby Keith, Marcus Miller, Dave Koz, A.C. Green, Jonathan Butler, Steve McKeever, Billy Tubbs and the Tisdale family. Emmy nominated documentary director Brian Schodorf produced and directed the film and will be speaking at the premiere. The Los Angeles Times says “The Wayman Tisdale Story is a must-see film for all audiences.” View the trailer here.
The Scott Carter Foundation is excited to join forces with filmmaker Brian Schodorf to host the first public screening of “The Wayman Tisdale Story“. The event will be just like a Hollywood premiere–complete with a red carpet, photo ops, and the viewing of the hour long documentary. “The Wayman Tisdale Story” has been featured in multiple film festivals and has won numerous awards. It also features the song “Cryin’ for Me” which was written and performed as a tribute to Tisdale by Toby Keith.
Wayman Tisdale passed away in 2009 after a two-year battle with Cancer. He suffered from Osteosarcoma, a rare bone cancer, that also took the life of Tulsan, Scott Carter at age 13 in 1993. According to the American Cancer Society, each year about 800 new cases of Osteosarcoma are diagnosed in the United States. About 400 of these are in children and teens. Osteosarcoma is not a common Cancer and more research is needed. To date, the Scott Carter Foundation has raised $1.7 million for Children’s Cancer research. Read more about the Foundation here.  “The Wayman Tisdale Story” premiere will take place at 7:30pm on Saturday, October 29 at the Walter Arts Center at Holland Hall, located at 5666 East 81st Street (Tulsa, Oklahoma). Doors open at 6:30pm. The event is free and open to the public. The Tisdale family, Director Brian Schodorf and the Carter family will be available for interviews. A copy of the movie is available upon request.

now available from e-bookstands: The Miles Levin Story

reposted from
Miles Levin, a gifted but unfocused teenager from suburban Detroit – whiling away hours on videogames – is jolted by a diagnosis of a deadly cancer. Working out his feelings in writing on a blog, his charm, humor, spirit, and unceasing honesty drew the attention of readers from around the world. You - as have tens of thousands of others - will be amazed, humbled, and helped by what he wrote as he struggled with the hardships destiny imposed on him. Bob Woodruff, ABC news journalist, said of Miles, “He has told us what it means to live life without fear, but with Joy.”
While most of Miles’ days were challenging, some were filled with the happiness every teenager hopes to have – the thrill of first love, the fun of prom night, and the caring and admiration of friends. Cancer was bringing an end to his life, but he brought completion to his life. In so doing he inspires us to be mindful, loving, joyful, and thankful. He left us an enduring gift, thereby fulfilling his greatest desire when he wrote: “Dying is not what scares me; it’s dying having had no impact.” 
The link to the e-bookstands wesbite for this book is here

Thursday, October 20, 2011

Whose data?

For an interesting concept, see Sage Bionetwork's website on a new trend for patients to have access to data generated from their own samples.  Quoting, "Key objectives: Enable patients to obtain their own data back from samples they donate to trials".  A very provocative idea! 

Wednesday, October 19, 2011

Leaving a Legacy - the value of tumor tissue from Autopsy

While a difficult topic, there may be times where a cancer death can have more meaning by improving knowledge of the disease through tissue donations after life.  For the first in a series of publications related to childhood cancer 'Legacy Gifts', see our co-authored paper in the journal Cancer entitled, "The clinical, research, and social value of autopsy after any cancer death: A perspective from the Children's Oncology Group Soft Tissue Sarcoma Committee".

More information can also be found at or our partner website at the Northwest Sarcoma Foundation.  See also our PCB related blog entries on this topic.  

OPEN SCIENCE FORUM:   (updated 04/05/2012, with comments welcome!) 
Below are our academic-community team's intended project milestones for defining a path to survival for the most incurable childhood cancers:

  • begin national dialogue with pediatric oncologists about the topic. 
    • Legacy Gift Workshop presented at Fall 2011 Children’s Oncology Group (COG) meeting, in partnership with two Sandy Smith and Kim Spady, who themselves are cancer survivors presented their families experiences with tissue donation after their sons passed away from brainstem gliomas.  Sandy and Kim are passionate supporters of families on this topic, and have first-hand experience facilitating these types of tissue donations after life (at autopsy).  
  • understand and publish the potential barriers to autopsy as understood from interviews of families conducted under our NCI-funded project, NIH/NCI R01CA133229-04S2.
    • This study is the successor to the position paper we published for the COG Soft Tissue Sarcoma committee:
      • Sheri L. Spunt, Sara O. Vargas, Cheryl M. Coffin, Stephen X. Skapek, David M. Parham, Joan Darling, Douglas S. Hawkins, Charles Keller.  The Clinical, Research, and Social Value of Autopsy after Any Cancer Death:  A Perspective from the Children’s Oncology Group Soft Tissue Sarcoma Committee.  Cancer, 2011 Oct 17 epub [PMID 22006470]
  • create a shift in culture among medical care providers by seeking to have an educational session on how to approach the topic of autopsy with families at the COG Fall 2012 meeting.
    • This is a successor to the Fall COG 2010 workshop, OVERCOMING AUTOPSY BARRIERS IN PEDIATRIC CANCER RESEARCH: Providing Hope For Tomorrow’s Cures described above.
  • optimize to work in parallel with other websites such as, having peer education & caregiver guidelines as well as assistance for families via an online single-point-of-contact.
  • write a Children’s Oncology Group autopsy banking protocol for all childhood cancers by multi-institutional collaboration by Spring 2012.
    • All specimens would be sent to the COG Biorepository in Columbus, Ohio.
    • Access to any specimen in the COG Biorepository would require COG disease subcommittee scientific peer review to ensure the study request was scientifically rigorous and used only the amount of sample absolutely required (in order to increase the number of studies per tissue collection).
  • seek a foundation that would help fund the costs of autopsy collection kits, as well as a reimbursement to COG institutions for the logistics of packaging and shipping autopsy collections by Summer 2012.
  • encourage broad use of these highly valuable, high informative tissue specimens starting Fall 2012 so that the 1 in 5 children not cured of cancer may someday survive his/her cancer.
01/09/2012:  manuscript for the NCI-funded study of autopsy barriers to be submitted today.
03/28/2012:  Effort to create an autopsy educational session for the Fall COG session instead suggested to be made an educational session at the ASPHO conference.
04/05/2012:  Consortium grant for COG-based autopsy program submitted today to St Baldrick's Foundation.
05/17/2012:  Jen presents Legacy Gift study at APOSW national conference in Portland.  
06/26/2012:  Consortium grant for COG-based autopsy program received 2 overwhelmingly positive reviews, and one very brief non-positive review.  Project will not be funded.  Effort will be revised and resubmitted for funding elsewhere.  Copy of the submitted grant and reviews are available on request.  
06/27/2012:  Manuscript submitted to a scientific journal is now in revision, and will be resubmitted within the week.
08/16/2012:  Manuscript accepted to Pediatric Blood & Cancer, the leading journal in pediatric hematology-oncology.  Congratulations to Jen and all co-authors!
09/06/2012:  Rally Foundation takes a bold new step to bring this effort to a national level!
09/26/2012:  paper is now published online here.
02/01/2013:  See the editorial, "Pediatric autopsy consent: Helping families create hope out of despair", written in Pediatric Blood & Cancer here (it accompanies our paper's print version is the same issue).  

our approach to Personalized Cancer Therapy

Many thanks to the team and to the patients that helped created this first video version of our vision for personalized cancer therapy.  The approach will probably be moved from canine patients to human patients in the context of relapsed disease.  It's certainly something we are moving ahead as quickly and as carefully as we can.  A high resolution of our video can also be found here.