USA: The National Leiomyosarcoma Foundation (NLMSF)

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Contact Information

The National Leimyosarcoma Foundation (NLMSF)
2843 E. Grand River,  Suite 230
East Lansing, MI  48823 - 6722
USA

Tel.: +1 303  783-0924
Fax: +1 303  783-4838
Email:   This email address is being protected from spambots. You need JavaScript enabled to view it.
Web: http://www.nlmsf.org/

 

Contact Person

Annie Achee (President)
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Organisation Profile

The National Leiomyosarcoma Foundation was incorporated in 2001. The original patient/caregiver gatherings of support began in 1997 as a "HugFest" annual event.  Today,  the NLMSF is a robust patient/family/advocacy support organization that focuses on empowering patients diagnosed with Leiomyosarcoma within the cancer/sarcoma ecosystem.

The empowerment support offered by the Foundation encompasses multiple annual patient education programs throughout the United States and in 2018, Canada and the UK. The Foundation collaborates with researcher, cancer/research treatment centers to ensure that LMS education opportunities are available to patients, their families and caregivers. Knowledge is power = Patient Power. To know more is to be able to ask the right questions and enhance one's oncology appointment and strengthen the care team experience.

Funding the much needed LMS research is another important component of the mission and purpose of the NLMSF. Standing behind the researchers that give hope to extend survivorship through the much needed breakthrough research efforts - to accelerate advancement in treatment options is imperative. the average survival time is 5 years from diagnosis.

The NLMSF Mission and Focus:

  1. LMS LIVE CONNECT -  Monthly patient-to-patient conference call in (telecon)
  2. FACEBOOK SUPPORT GROUP/Twitter
  3. CONNECT WITH A CLINICIAN PROGRAM -  general questions posed by patients to 8 volunteer world- renowned clinicians, providing answers/general support
  4. ANNUAL PATIENT-FAMILY-CAREGIVER EDUCATION PROGRAMS on LMS
  5. SIDE-EQ -  PATIENT  REGISTRY OF SIDE EFFECTS -  collaboration with the Life Raft Group
  6. THE CANCER CELL LINE PROJECT -  in collaboration with the Rare Cancer Research Foundation and the Broad Institute of MIT/HARVARD
  7. COLLABORATIVE PARTNERSHIPS WITH OTHER SARCOMA /CANCER ORGANIZATIONS (Listed on the home page of the Foundation’s website at www.nlmsf.org)
  8. LMS RESEARCH SUPPORT -  funding / co-funding research projects approved by our 16 members of the NLMSF Medical Advisory Committee -  all world renowned researchers
  9. COLLABORATIVE ALLIANCE ADVOCACY:  Building Bridges with to advocate for patient data platforms as listed below to advance research initiatives – for global access

ONCOSCAPE – Fred Hutchinson Cancer Center
PROJECT GENIE -  American Association of Clinical Research (AACR)
ORIEN -  Oncology Research Information Exchange Network

https://leiomyosarcoma.info/ - research / clinical trial updates,  information on immunotherapy updates, webcasts, youtube presentations, interviews with researchers from the 2017 CTOS conference in Maui.  

www.nlmsf.org - provides patient-family-caregiver resource assistance information on how to proceed with the initial diagnosis, navigating the treatment journey and after treatment -  survivorship care planning, quality of life resource information.

The Foundation is supported by 35 Medical Advisory Council Members -  all esteemed, world-renowned research oncologists who review incoming research grant proposals for the Foundation.

The Foundation is representing the Leiomyosarcoma community in its involvement in:  

  1. Steering Committee of the newly formed Sarcoma Patient Advocacy Coalition, a new arm of SARC
  2. AACR Scientist-Survivor Program
  3. AACR  Tumor MicroEnvironment Workgroup
  4. ASCO  Volunteer Corp.

The Foundation has been working for two years with legislators in Washington, D.C. to bring about National Sarcoma Awareness Month for July, and regain its 2016 success for National Leiomyosarcoma Day - July 15. Such efforts are ongoing annually with Senator Deborah Stabenow (D-Michigan) who has championed this cause for two years on behalf of the leiomyosarcoma/ sarcoma communities.