History and Mission of the NLMSF
Our mission is to advance research in order to accelerate treatment options and offer supportive resource assistance to patients and caregivers throughout the diagnosis and treatment journey.
ADVANCING RESEARCH TO ACCELERATE TREATMENT OPTIONS:
The first-ever N L M S F – SPAEN INTERNATIONAL L M S RESEARCH ROUNDTABLE, launched in 2019. 65 Researchers from around the world are in support of this annual meeting initiative, to come together – to work together on behalf of the LMS Patient Community. Advancing precision research to design precision studies and clinical trials are the objective of the LMS Research Roundtable. The Sarcoma Patients EuroNet (SPAEN) are the Foundation’s collaborative partners for this initiative.
History and Patient Resource focus of the Foundation:
The NLMSF’s mission is to do all we can to meet the needs of Patients, Families, and Caregivers. We have been on the front line of research collaboration since 2002; funding support of well vetted LMS specific research projects. The Foundation has developed numerous programs to provide resources to the LMS community and invaluable partnerships with those researching this rare disease.
PATIENT/ FAMILY/CAREGIVER RESOURCES:
- MULTIPLE ANNUAL LMS EDUCATIONAL SYMPOSIA at major sarcoma centers throughout the USA and Canada.
- MEDICAL JOURNAL/APPOINTMENT ORGANIZERS complimentary to LMS patients.
- EDUCATIONAL WEBINARS in partnership with other organizations for patients and caregivers.
THREE SUPPORT WEBSITES
- Our main NLMSF web site provides a wealth of information about LMS and how to navigate diagnosis and treatment.
- The NLMSF Research site provides information on the latest research, clinical trials, data collection programs, and more.
- NLMSF Life Change focuses on the emotional and support side of the journey as well as life after treatment.
- NLMSF NEWS TRACKER is a weekly newsletter providing tips, research updates, notice of events, and other LMS research news. [I linked this to archive, but should it to go interactive page? And with all this header changing we’ve lost a place to subscribe.]
- Patient – Caregiver Advocacy Network [Roundtable] – A Foundation initiative to bring the voices of patients and caregivers together to share experiences in diagnosis and treatment to help improve standard of care through recommendation to oncology care team consideration, and the LMS Research Roundtable enhancement of the NCCN Guidelines for standard of care, to specifically address LMS patient needs and issues. Patient/caregiver input will also be shared with the NCI MyPart Network initiative collecting natural history data.
- LMS LIVE CONNECT is a monthly conference call for patients, family members, and caregivers to share their experience and provide support.
- LMS SUPPORT HELPLINE 24/7 HELPLINE: 303 808-3437
- CONNECT WITH A CLINICIAN PROGRAM provides an opportunity to connect with research oncologists to ask general questions.
- SIDE EFFECTS EQ is a free tool that helps you manage cancer treatment side effects and learn from experts–medical professionals, and fellow patients.
- THE LMS INTERNATIONAL RESEARCH ROUNDTABLE is an annual gathering of researchers to discuss LMS specific issues, develop new standards of care for LMS patients, and collaborate on investigational studies that can lead to more precise clinical trials.
- THE CANCER CELL LINE PROJECT– A collaborative partnership of NLMSF with the Rare Cancer Research Foundation and the Broad Institute of MIT/Harvard to establish patient-driven support for research through donation of tumor tissue and fluids, which can advance tumor development for global data and researcher initiatives.
- NCI MyPART NETWORK program brings patients and their families together with healthcare providers, advocacy organizations, and researchers to work together to find treatments for rare cancers affecting children, adolescents, and young adults.
- THE SARC RESEARCH ADVOCACY COUNCILThe NLMSF is a member of the SARC Research Advocacy Council to bring the voice of LMS patient community to the table through to:* Developing recommendations and providing input based on experience and understanding of treatment protocols.* Developing recommendations to enhance programs and activities that may currently be experiencing barriers to implementation.* Disseminating to patients available trial information and distribute research findings once trials are completed.