History and Mission of the NLMSF

The NLMSF was launched in 1997 by patients and families who wanted to find a way to come together in support of one another – building courage, hope, strength, and resilience to see each other through the difficult journey of this rare cancer.
It all started as an annual  “Hugfest” and has evolved over the years to LMS patient-family-caregiver education, with patient advocacy programs throughout the United States, and Canada.  Building strong alliances with other non-research and research related organizations is important to the NLMSF.
The Foundation honors the LMS Community of patients/families/caregivers through:
*   Building awareness in communities, energizing patients and families to be strong self-advocates for their care,
* funding research projects to help accelerate treatment advancements are the focal points of the NLMSF mission.

*  Reaching out to build collaborative partnerships with other organizations is another important hallmark of the Foundation, to further support patients and families by amplifying resource assistance in this way.

FOUNDATION MISSION AND FOCUS:

  • Annual Patient-Family/Caregiver Education Symposia
  • Patient Advocacy Resource Assistance Collaboration
  • LMS Research Funding Support
  • Organizational Collaborative Alliances for Advocacy of Programs that benefit patients/families/research efforts
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.

Collaborative alliance with SARC to support new researchers interested in Sarcoma/LMS and SARC-SPORE studies.

THE NLMSF WORLD RENOWNED MEDICAL ADVISORY COUNCIL of 34 MEMBERS: 

  • The Medical Advisory Council represents world-renowned researcher oncologists, vetting research project proposals for funding by the Foundation.  This is an important donation stewardship component of the Foundation, to ensure that all “investments in research” are applied for the most promising LMS specific research projectshttp://nlmsf.org/about/medical-advisory-committee/
  • Dr. Mitch Achee, MD, is the Chair of the Council, hosting annual events to acknowledge the collaboration of the Council Members and those that partner with the Foundation for patient education programs through the year.

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  to Dr. Breelyn Wilky, Sarcoma Research Oncologist at the Sylvester Cancer Center, Miami, FL

  • 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 and ADVOCACY/SUPPORT ALLIANCES:
Visit:  leiomyosarcoma.info – the NLMSF companion website – to learn more and see special video presentations on the following:
American Association of Clinical Research (AACR) -PROJECT GENIE – a patient data collection platform to evaluate clinical trial results.
CANCER CELL LINE PROJECT –  with the Rare Cancer Research Foundation/Broad Institute of MIT-Harvard  –  a patient-driven research support through patient consent to donate tissue samples at the time of biopsy/surgery
ONCOSCAPE –  through the Fred Hutchinson Cancer Center, Seattle –  Collaborative Advocacy for this program – a patient data platform that supports research initiatives.
ORIEN –  Oncology Research Information Exchange Network – a patient data platform that supports research initiatives, and involves at least 13 – 17 cancer institutions so far.
CANCER CARE –  Video patient education workshop partnership
The remaining list of collaborations are listed on the NLSMF Home page.

LMS RESEARCH SUPPORT 

Through the Foundation’s Medical Advisory Council, comprised of world-renowned research clinicians, LMS specific research projects are reviewed and recommended for funding, once such projects are evaluated as holding great promise for advancing treatment options in the future. Co-funding research projects are an ongoing goal of the Foundation.  To date, many 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 study publications that lead to further development toward hopeful clinical trials.

CONTACT INFORMATION FOR THE FOUNDATION:

Annie Achee, President

303  783-0924  /

annieachee@aol.com

Dr. Mitchell D. Achee,  Medical Advisory Council Chair

303  808-3437

THE NLMSF IS WORKING HARD FOR-  Y O U!

Reaching For the Cure Together

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