2843 E. Grand River Avenue – #230 East Lansing, MI 48823 [email protected] 303-783-0924

History and Mission of the NLMSF

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:

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.]
  • LIST OF U.S. SARCOMA CENTERS
  • LMS LIVE CONNECT is a monthly conference call for patients, family members, and caregivers to share their experience and provide support.
  • LMS SUPPORT HELPLINE through collaboration with the Cancer Support Community­ provides trained social workers available to answer general questions for patients and caregivers.
  • 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.

RESEARCH RESOURCES

  • 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 COUNCIL

     “Representing Patients/Families/Caregivers”

    The 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.
  • COUNT ME IN program brings patients and researchers together as partners to accelerate discoveries.  Count Me In empowers individuals living with cancer to contribute to breakthroughs and increase the pace of biomedical research, no matter where they live.  LMS will be included in this project soon.
  • THE C.A.R E. EFFECT MOVEMENT (a collaboration of NLMSF) is designed to inspire America’s health care professionals to reconnect with the compassion that got them into medicine, and then inspire them to redouble their efforts to provide even more compassion to better heal their patients, colleagues, and themselves.

Contact the National Leiomyosarcoma Foundation directly for questions about any of the programs highlighted in this summary: Annie Achee   303  808-3437 or [email protected].