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Sarcoma Advocacy Organizations Meet in Chicago

SARC Meeting

Friday, June 2nd was an interesting and invigorating day for Rein in Sarcoma Board Members, Dr. Larry Seymour, Sue Wyckoff and Pete Wyckoff. In the morning, we attended the SARC meeting. Sarcoma Alliance for Research through Collaboration (SARC) is a group of doctors and researchers who are working to provide a collaborative infrastructure to make progress in the prevention, diagnosis and treatment of Sarcoma. We heard speeches on topics including two on using Genomic information in sarcoma treatment. There was also a section on Resources for Investigators. Finally, there were reports on five clinical trials that are being run by SARC. About 300 doctors and researchers from around the world attended, including several of our Minnesota doctors.

RIS Board member, Larry Seymour, MD, reflected on the meeting: “Among other things (i.e., interesting papers) the need for pooling information and developing data banks came across loudly. It was a good meeting, and hopefully the start of a truly national sarcoma organization. During the meeting, Dr. Lawrence Baker, one of the founders of SARC, held some researchers’ feet to the fire, challenging assumptions, and interpretation of results. It appears a lot is in good shape with SARC.”

RIS Board member, Dr. Larry Seymour listening to Dr. Scott Okuno, Mayo Clinic

Meeting with Sarcoma Organizations

Sarcoma Organizations networking session

In the afternoon SARC and Rein in Sarcoma collaborated to run a phone and web video conference with Sarcoma organizations around the country, focusing on their programs and areas in which all of the groups can collaborate. Each group submitted a one-page summary of their work before the conference and gave a two-minute summary of what they were doing. Important conversations began during this call about ways to increase collaboration of sarcoma organizations across the country.

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Dr. Randy Hurley – Leads RIS Pilot Educational Efforts

Dr. Randy Hurley is a hematologist/oncologist at Regions Hospital and Medical Director of HealthPartners’ Cancer Care Program. He has been involved with Rein in Sarcoma since its onset. He was Karen Wyckoff’s medical oncologist and attended the very first RIS event with her. He has since attended nearly every Party in the Park and maintains a close relationship with Pete and Sue Wyckoff.

Dr. Hurley graduated from the University of Wisconsin – Madison with an undergraduate degree in Pharmacy. Before and during medical school, he worked as a clinical pharmacist on the hematology-oncology ward at the University of Wisconsin. He completed his internal medicine residency and chief resident year at UW as well. During this time, he was involved in basic science research on extracellular matrix proteins.

In 1991, Dr. Hurley came to the Twin Cities, where he completed a hematology-oncology fellowship at the University of Minnesota and spent an additional year investigating hematopoietic stem cell adhesion to extracellular matrix proteins. He has been at Regions Hospital for over 20 years, the past nine of which have been spent as the Medical Director of HealthPartners’ Cancer Care Program. Dr. Hurley also holds a special interest in global health. He is board-certified in tropical medicine and has had an ongoing health care project in Tanzania for 15 years.

Early influences in his career drew Dr. Hurley towards a career in hematology-oncology. Working with cancer patients, he says, is both an art and a science. His career provides both inspiration and challenge on a daily basis. According to Dr. Hurley, because sarcomas are so rare, many primary care physicians may not be familiar with how they present. This poses a unique health care challenge.

Dr. Hurley is leading a RIS pilot project at Regions Hospital and HealthPartners to increase awareness of sarcoma cancers among medical providers with the goal of significantly reducing the amount of time between the onset of sarcoma symptoms and a proper diagnosis. As a part of this effort, he is heading up a RIS Task Force with Robert Gao, 2016-17 Sarcoma Scholar; Brittany E. Mathews, Senior EPIC Specialist for HealthPartners Oncology Service Line; Tim Michalski, CEO of Point of Care Decision Support, Jay Syverson, President of Point of Care, Decision Support; Christian Ogilvie, MD, RIS Board of Directors; Pete and Sue Wyckoff. The Task Force is seeking to develop an electronic medical record alert to help Primary Care Physicians to recognize and appropriately evaluate suspicious soft tissue masses at an early stage. This pilot project is a key part of the efforts of the RIS Hallie Anne Brown Educational Initiative.

Interview by Robert Gao, 2016-17 Sarcoma Scholar

Featured Volunteer Needs – June 2017

Rein in Sarcoma totally relies on great volunteers (you!) for our success. Here are some current volunteer opportunities for which we have a special need.

Sarcoma Family Picnic Volunteers

Red Flags Committee

The Rein in Sarcoma Red Flags Committee is looking for volunteers who can help get the word out and educate the public about sarcoma cancers. This will include passing out literature and talking to people about sarcoma cancers. Volunteers for the Red Flags Committee will attend events and meetings throughout the year.

For more information about this volunteer position contact Connie Dow at Ph: 844-727-2662 ext 3 or by email.

Apply for this position at: New Volunteer Form

Patient and Family Support Committee

Rein in Sarcoma is looking for compassionate volunteers to help us better serve the needs of sarcoma patients and their loved ones. Our Patient and Family Support Committee reaches out to sarcoma patients and their loved ones by providing peer-to-peer mentoring, organizing social gatherings for those affected by sarcoma, providing gift bags for newly diagnosed and relapsed sarcoma patients, and by providing informational notebooks about sarcoma with hospital resources for sarcoma patients. This committee has monthly meetings and attends gatherings throughout the year.

For more information about this volunteer position contact Connie Dow at Ph: 844-727-2662 ext 3 or by email.

Apply for this position at: New Volunteer FormRead More

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