Foundation Mission And Focus

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

THE NLMSF SUPPORT PROGRAMS:

LMS LIVE CONNECT –  Monthly Patient- to Patient-driven telephone conversation

  • Building strength, courage, inspiration, and hope through personal conversations and sharing stories and experiences with one another

CONNECT WITH A CLINICIAN PROGRAM – Through the Foundation Facebook

  • General support from 8 world renowned volunteer clinicians providing general answers to general questions posed by patients. This does not take the place of one’s own oncologist or care team

ANNUAL PATIENT – FAMILY – CAREGIVER LMS EDUCATION PROGRAMS

  • Multiple programs throughout the year across the USA
  • Collaborative programs with other sarcoma conferences in the US and Canada

THE NLMSF / LIFERAFT GROUP (GIST)   SIDE-EQ SIDE EFFECTS PATIENT REGISTRY

  • Offering patients information on treatment side effects to be aware of, as well as additional information on managing side effects through the SIDE EQ PATIENT REGISTRY.

THE NLMSF / RARE CANCER RESEARCH FOUNDATION PARTNERSHIP

  • Collaboration with the Rare Cancer Research Foundation (RCRF)  – a partnership to represent the LMS Community for THE CANCER CELL LINE PROJECT – a program that promotes amplification of tumor tissue after surgery to accelerate research efforts.  Researchers surveyed are in favor of this program, which is coordinated by the Broad Institute of MIT and Harvard.

Visit pattern.org for more information and guidelines for patients to follow to participate.

SARCOMA ALLIANCE FOR RESEARCH THROUGH COLLABORATION SARC) MEMBERSHIP

Map of Clinical Trial updates throughout the USA for Patient/Family Access:

http://sarctrials.org/sarc-centers-map. Newsletter FB linked updates provided to the LMS Community.

THE NLMSF WORLD RENOWNED MEDICAL ADVISORY COMMITTEE

  • This committee of researchers/clinicians represent some of the best in the world.  They are charged with vetting research project requests for funding by the Foundation.  This is an important donation stewardship component of the Foundation, to ensure that all “investments in research” are used for the most promising LMS specific research projects. http://nlmsf.org/about/medical-advisory-committee/

NLMSF WEEKLY BULLETINS 

  • Weekly information updates on research news, clinical trial listings,  well-being articles, and more
  • Communication of updates to the ACOR and Smart Patients Group, as well as community Patient Support Groups
  • Article submission by the Foundation to:  CURE MAGAZINE and GLOBAL GENES

THE  FACEBOOK  SUPPORT GROUP   / BLOG LINKS and  THE NLMSF WEBSITE

  • The NLMSF Facebook group, the Leiomyosarcoma.org Facebook group, Sarcoma Alliance For Research Through Collaboration Facebook, Dr. B. Wilky’s Blog (research oncologist at Univ. of Miami) have joined together for patients to have a greater support resource opportunity –  to exchange/share information, stories and build courage, hope, strength.
  • NLMSF.ORG  WEBSITE offers continuous research updates,  caregiver support information,  Survivorship Care planning information,  a plethora of patient resource assistance from financial assistance information,  personal care, meal planning, house cleaning sources,  companies that specialize in cold caps/wigs. . . and much more . . .

COLLABORATIVE PARTNERSHIPS WITH OTHER SARCOMA / CANCER ORGANIZATIONS

  • To enhance/expand patient resource assistance for patients and their families
  • Stronger together in mission and purpose on behalf of patients/families/caregivers

 LMS RESEARCH SUPPORT 

  • Through the Foundation’s Medical Advisory Committee, comprised of world-renowned research clinicians, LMS specific research projects are reviewed and recommended for funding, once such projects are established as holding great promise for advancing treatment options in the future.Co funding research projects are an ongoing goal of the Foundation.  To date, several research projects have been co-funded, with more under current review. Additionally, the Foundation’s goal is to incentivize young researchers to continue their interest in LMS specific research endeavors, through monetary recognition of published studies.

CONTACT INFORMATION FOR THE FOUNDATION:

Annie Achee, President

303  783-0924  /   303  808-3437

annieachee@aol.com

Reaching For the Cure Together