OHSU Doernbecher Pediatric Cancer Program will represent Oregon on StoryCorps’ National Day of Listening, Nov. 26

Sarcoma patients, their families, physicians, nurses and volunteers will gather at OHSU Doernbecher on the day after Thanksgiving to preserve their stories for future generations. 

StoryCorps, one of the largest oral history projects of its kind, has asked the Pediatric Hematology/Oncology division at OHSU Doernbecher Children’s Hospital to be an official representative in Oregon for the 2010 National Day of Listening.

About 25 OHSU Doernbecher patients, family members, volunteers, nurses and physicians will preserve their stories of courage, strength and hope for future generations by recording an interview with someone they care about. All of the patients have, or have had, sarcoma, a cancer that occurs in the muscle, fat, fibrous tissue, blood vessels or other supporting tissue of the body. A synopsis of their stories will be posted on the “Wall of Listening,” on the National Day of Listening Web site and recorded on a free CD to share.

“We hope to eventually expand on StoryCorps’ ‘National Day of Listening’ and allow all of our patients to be interviewed,” said Rae Acosta, R.N., research nurse coordinator in the Division of Pediatric Hematology/Oncology, OHSU Doernbecher Children’s Hospital.

WHERE:        OHSU Doernbecher Children’s Hospital first-floor lobby, 700 S.W. Campus Drive, Portland

WHEN:           Friday, Nov. 26, at 9 a.m.

DETAILS:      The 2010 “National Day of Listening” marks the first time StoryCorps has had "official state representatives." To become an official state representative, organizations must conduct at least five National Day of Listening interviews with members of their organization or others in their community and post a summary of those interviews on the "Wall of Listening."

This outreach initiative was made possible through a National Cancer Institute grant resulting from the Carolyn Price Walker Act. The grant, awarded to Charles Keller, M.D., F.A.A.P., and Melissa Hill of the Northwest Sarcoma Foundation, specifically allocates resources for a StoryCorps Outreach Initiative.  Credit for the project concept goes to Dr. Linda Stork, Division Chief of Pediatric Hematology/Oncology.  The Co-organizing the StoryCorp project with Acosta is Keller laboratory research scientist Jennifer Alabran.

The National Day of Listening is a new national holiday started by StoryCorps in 2008. On the day after Thanksgiving, StoryCorps asks all Americans to take an hour to record an interview with a loved one, using recording equipment that is readily available in most homes, such as computers, iPhones, and tape recorders, along with StoryCorps’ free Do-It-Yourself Instruction Guide. StoryCorps is an independent nonprofit whose mission is to provide Americans of all backgrounds and beliefs with the opportunity to record, share, and preserve the stories of our lives.

This information is also at:  http://www.ohsu.edu/xd/about/news_events/news/2010/2010-11-24-ohsu-doernbecher-pe.cfm   

OHSU Doernbecher Children’s Hospital Development Therapeutics Program

The principal aim of the Doernbecher Children’s Hospital Development Therapeutics program is to evaluate novel agents for the treatment of pediatric cancer through early phase clinical trials. We conduct Phase I and Phase II trials of potentially promising new drugs for the treatment of all types of childhood cancer.  Doernbecher is one of 21 select institutions throughout North America who comprise the NCI-funded Children’s Oncology Group Phase I Consortium.  Through our participation in COG early phase trials, industry-sponsored trials, and investigator-initiated studies, we hope to find better therapies for the treatment of childhood cancer.

  

The principal investigator of the Doernbecher Children’s Hospital Development Therapeutics program is pediatric hematologist-oncologist, Dr. Suman Malempati.  For a recent discussion by Dr. Malempati on a targeted therapy for childhood sarcomas, see the November 16th  NCI Cancer Bulletin.  Integral, too, to the Development Therapeutics program is Rae Acosta, RN.  

Why we do what we do!

From my earliest days on the wards as a medical student, I was struck by the courageousness of children and adolescents with cancer - and the inability of current medical practices to offer long term survival to such a large fraction.

Later, as a new pediatric hematology oncology fellow, I cared for a vibrant adolescent/young adult with rhabdomyosarcoma, a type of muscle cancer. In the space of one year, I attended both her engagement party and her funeral. This result repeated itself year after year for patients with the same disease.

I was sure someone would make a breakthrough, but in stepping back from the situation I realized that the lack of breakthroughs dated from 1972. If there were to be a change, I needed to be the catalyst for that change. With my love for research (as well as some luck in being in the right environment at the right time), I knew what my mission should be: Unravel the biology of these kinds of tumors and bring tangible, effective new treatments to the clinic.

Almost a decade after caring for that young woman with rhabdomyosarcoma, I find myself the inaugural leader of the Pediatric Cancer Biology Program at OHSU. Our program’s mission is to understand refractory childhood cancers.

In its first phase, our Program will address not only soft tissue and bone sarcomas, but also brain tumors and neuroblastoma.  My own laboratory anchors the Program with study of rhabdomyosarcoma as well as medulloblastoma, the most common malignant childhood brain tumor of childhood. Using genetically modified mice and other tools, my laboratory’s research team seeks molecules in tumors that can be directly turned on or off by drugs, so that the tumor stops growing & spreading.

We pursue these goals with urgency and accountability, and importantly, through collaboration with colleagues in the physical sciences. Our belief is that new treatments should be made available in the next one to four years, rather than 25 to 50.  Said simply, we hope to develop personalized, non-chemotherapy treatments for children with cancer.

Why Portland, and why now? OHSU is a fantastic place to be. I believe that in the next three to seven years that Brian Druker, M.D., Director, OHSU Knight Cancer Institute, will be increasingly recognized not only for developing a non-chemotherapy treatment for Chronic Myelogenous Leukemia, but also as an international leader for personalized medicine.

I have seen how transformational this kind of recognition can be for an institution, and rest assured all the world’s eyes will soon turn to OHSU.

What they will find is something very special:  a community of citizens and researchers working side by side building the infrastructure and creating the discoveries that pioneer personalized cancer care in the here and now.

Charles Keller, MD

Leader, Pediatric Cancer Biology Program

OHSU

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