For over a decade, more than a thousand sarcoma patients and caregivers from around the country began to “take charge” of their sarcoma story through the Rein in Sarcoma Patient Starter Notebook. The Notebook is an 80+ page comprehensive source of quality information designed for newly diagnosed sarcoma patients. Print editions are provided free of charge through cooperating medical centers and directly through Rein in Sarcoma. An online version is also available for immediate download.
Last published in 2016, we are now making plans to update and revise the 7th edition of the Notebook and we need your help! If you received a RIS Sarcoma Patient Starter Notebook anytime in the past few years, we want your feedback as we begin work on the next edition. Please take a few moments to complete our online Notebook survey. Thank You!
Learn about upcoming August events for your participation and support of Rein in Sarcoma's mission in the interview below with Tom Boardman: RIS Development Committee Chair, Team Sarcoma Captain for the Chainbreaker Bike Ride, and Organizer of the RIS Annual Golf Tournament.
1. Can you tell me a little about the two events coming up?
The first is Chainbreaker 2018 which is a bike ride event to raise money for cancer research at the University of Minnesota Masonic Cancer Center. This event will be August 11. We participated in the inaugural Chainbreaker event in 2017 with 18 riders and raised over $23,000, all of which went to sarcoma research. This year we have 27 riders and have raised over $50,000 so far.
The second event is the RIS Charity Golf Challenge on August 20. We had our first golf tournament last year and it was sufficiently successful for us to have another this year. We hope to have over 70 golfers join us for lunch, a scramble format golf tournament and a dinner. We will have prizes including a 2018 SUV for anyone who gets a hole in one. The vehicle is being donated by one of our sponsors, PSI Cars. Our lead sponsor this year is Legacy Wealth, a financial advising firm located in Woodbury, MN.
Over a dozen sarcoma advocacy groups, some which focus on specific sarcoma sub-types and those covering all types of sarcoma, met in Chicago on June 1, with the purpose of forming a coalition to “achieve more – together.” The purpose of the Sarcoma Patient Advocacy Coalition (SPAC) is not to replace any organization, but by working together, the individual organizations hope to leverage their collective strength to make a greater impact in meeting the needs of the sarcoma community. All of the groups in attendance, by phone or in person, agreed that this idea has promise through the continuum of the sarcoma journey, from diagnosis and treatment, to survivorship and quality of life issues.
The group decided that concentrating on a just a few areas would be the best use of available time and talent. In addition to the Educational Work Group, the coalition is in the process of determining the focus of a second work group. All work groups will be made up of representatives of the member organizations.Read More