We are excited to announce that the Northwest Sarcoma Foundation and OHSU Doernbecher Children's Hospital are partnering to raise awareness about sarcoma treatment and research in the Pacific Northwest thanks to a grant from the National Cancer Institute and the Carolyn Price Walker Act. "Together we will work to raise awareness that early access to specialized, clinical trial-driven sarcoma care greatly benefits children, adolescents and young adults with sarcomas and that increased regional awareness of sarcoma treatment and research also benefits these age groups, and the sarcoma community as a whole," said Charles Keller, M.D., leader of Pediatric Cancer Biology Program in the Papé Family Pediatric Research Institute at OHSU Doernbecher Children's Hospital, and member of the OHSU Knight Cancer Institute. This awareness campaign has already begun in the following ways:
Participation In and Website Broadcast of StoryCorps: StoryCorps shares recorded stories to foster connection between people of all backgrounds, teach the value of listening, and nurture the appreciation that every life matters. OHSU Doernbecher Children's Hospital and the Northwest Sarcoma Foundation were invited to represent the State of Oregon for StoryCorps' National Day of Listening. On November 26, 2010, our alliance participated in The Legacy Initiative, designed to preserve and share the stories of people with life-threatening conditions.
Our program interviews with sarcoma patients included:
§ a parent of a child in treatment talking to a parent whose child has had a sustained remission
§ a child currently in treatment talking with his adult advocate 'ChemoPal'
§ a female high school student talking with a female college student - both of whom have had sarcoma
§ as well as other stories that are now available on the Northwest Sarcoma Foundation website
Online Community: The Northwest Sarcoma Foundation's website now includes an Online Community that will allow sarcoma patients and their families to reach out to others in the sarcoma community. The Online Community features focus groups discussing topics from the importance of seeing a sarcoma specialist, Legacy Gifts, bone or soft tissue sarcoma, financial assistance, grief support, as well as the ability to create discussion groups about issues important to each patient's sarcoma experience.
Oregon Health Sciences University (OHSU) Telemedicine: One of the major issues in improving sarcoma care in the western U.S. is increased access. OHSU is the only major academic medical center between Sacramento and Seattle.
With this grant, the multi-disciplinary sarcoma physician team at OHSU will host a weekly Pediatric Hematology-Oncology Tumor Board via teleconference. Currently the Anchorage Providence Hospital in Alaska is participating. ASANTE Rogue Valley pediatric oncologists will begin participating in July.
Through the Northwest Sarcoma Foundation website, www.nwsarcoma.org, we will raise awareness that cures for tomorrow's sarcoma patients may come from the selfless actions of sarcoma patients whose sarcoma experience resulted in loss of life, despite state-of-the-art treatment and increased awareness of research opportunities.
Leaving a Legacy: In the past few decades, pediatric cancer treatments have improved leading to increased survival rates; however, rare and more progressive cancers lag behind promoting the need for tumor samples to be used for research. Our knowledge of how childhood cancer forms and progresses is minimal making it necessary to use these invaluable samples to increase our understanding and identify new treatments. To find more information on "Leaving a Legacy", please visit the Northwest Sarcoma Foundation website.
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