The GIST and Sarcoma Journal �� transition from end of treatment to survival mode. Visit www.nlmsf.org - your LMS Patient Compass for support and vital information. • Collaboration in Partnership - The NLMSF is in partnership with several organizations that offer additional support of enhancing quality of life/well-being of patients and their families. The NLMSF is working with Pattern.org to empower patients to direct excess cancer tissue through the Rare Cancer Research Foundation’s Pilot Cell Line Project. The Foundation has done its due diligence, canvassing for input by researchers who are interested in the Foundation’s pursuit of this initiative in order to broaden their research capabilities for LMS Patients. The NLMSF was selected as the entity to represent the Leiomyosarcoma Community. • THE NLMSF was instrumental in collaborating for federal legislation to bring about Congressional approval for the National Leiomyosarcoma Awareness Day, through the coordination efforts of NLMSF Legislative Liaison, Steve Baker, Mayor Pro Tem of Berkley, MI. Senator D. Stabenow, (D-MI) brought about the Congressional Resolution for the 2016 National Leiomyosarcoma Awareness Day. The Foundation is working once again for continuous annual recognition of this rare cancer/rare form of sarcoma as well as introduce a Resolution for a National Sarcoma Awareness Day or Week for hopeful Congressional support and 2017 approval. Sarcoma is 1% of all cancers. There are approximately 50 - 100 sarcoma subtypes. Leiomyosarcoma is 13% - 17% of all sarcoma subtypes. There are approximately 5 Leiomyosarcoma subtypes, adding to the incredible complexity of this sarcoma subtype that creates the difficulty of its research to advance immunotherapy treatment and sustainability of treatment options. Annie Achee The National Leiomyosarcoma Foundation http://www.nlmsf.org - The Patient/Family/Care-partner Compass Moving Forward Together - Focusing on the Future - in the Quest for a Cure! . . . . . . . . Leiomyosarcoma - A Rare Disease With a Common Need The NLMSF Patient/Family and Research Focus is a “Mission That Matters” • Patient/Family/Caregiver LMS Education Programs across the United States and abroad • Patient Resource Assistance and Advocacy • Foundation Website - THE PATIENT COMPASS • Leiomyosarcoma Research Funding LMS Education Programs: Provides current information on latest treatment strategies, clinical trial information, ongoing and future research efforts, nutrition, physical and emotional wellbeing recommendations, as well as opportunity for connection opportunities with fellow patients as well as world renowned clinicians/experts in their medical field. Please visit www.nlmsf.org to access information about scheduled programs throughout the year. Patient Advocacy - The Foundation represents the voices of patients and their families at annual oncology society conferences, annual sarcoma conferences hosted by other cancer centers/institutes, and patient advocacy summits / conferences. Additionally, the Foundation is in partnership with Cure Magazine, writing periodic articles that are posted online by CURE, and also sent to OncNursesNews. The NLMSF coordinated efforts with the Senate starting in 2016 to successfully bring about Congressional approval for the first 2016 National Leiomyosarcoma Awareness Day. The Foundation coordinates efforts annually to encourage ongoing Senate and Congressional support for subsequent yearly national awareness recoginition of this rare cancer/ sarcoma. Contact Information: Annie Achee, President, NLMSF (303) 783-0924 or annieachee@aol.com Together We Are Stronger - Moving Forward . . . Focusing on the Future . . ..Opening Doors . . . . Reaching for the Cure! . . . . . . . . Foundation Mission and Focus: • Patient-Family/Caregiver Education And Support • Patient Advocacy Resource Program Collaboration • LMS Research Funding Support • Organizational Collaborative Partnerships - Bridging Patient • Resource Assistance Connect With a Clinician Program - A Q & A opportunity for patients to post a general question to a world renowned clinician ( one of 6 volunteers), and receive a general answer. This does not take the place of one’s own medical care team (disclaimer specification on the website). A highly successful support offered through the Foundation’s Facebook. The Facebook has three components: communication with Foundation followers; the Q & A which can be public or private; and the Blog. The NLMSF / Rare Cancer Research Foundation Partnership Collaboration with the Rare Cancer Research Foundation (RCRF) - a partnership to represent the LMS Community for the Pilot Cell Line Project - a program that promotes amplification of tumor tissue after surgery to amplify and accelerate research efforts. Researchers surveyed are in favor of this program, which has been connected to the NIH.
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