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

NLMSF Report 2019-2020


Established in 1997 by Patients / Families

L O O K I N G   B A C K  to  2019 . . .  L O O K I N G  F O R W A R D  TO 2020      

An ACCOUNTABILITY REPORT TO THE LMS COMMUNITY                                                                                           


The Success of an organization is evaluated and based on:

  • Financial health of the organization – GuideStar Member
  • Accountability and Transparency  –  this Report
  • Results – in 2019 / Focus for 2020  –   this  Report

2 0 1 9:

  •  The International LMS Research Roundtable –launched in September. Researchers from around the world coming together for an LMS-only Scientific Think Tank

Meeting, to discuss/debate the current concerns and establish workgroups to address the impediments to advance and accelerate more treatment options through more comprehensive research in the molecular biology of LMS.  Improving the Standard of Care for LMS diagnosed patients is an additional goal of the Roundtable.

 YOUR CONTRIBUTIONS are “INVESTMENTS”  In Action and directed to Research Only!

  •  Annual conference attendance at the American Society of Clinical Oncology (ASCO)
  •   Sarcoma Exchange in Miami to support the Sarcoma Alliance
  •  Sarcoma Alliance for Research Through Collaboration (SARC)

Research Patient Advocacy Council – to represent the LMS patient/family voice

  • Initiated collaboration with the National Cancer Institute’s research coordinators to bring the new  NCI  MyPART NETWORK initiative – for natural history data collection to the LMS Community:  https://leiomyosarcoma.info/mypart-network/, to work together for potential impact for information sharing with the LMS International Research Roundtable efforts through patient-driven participation, and tie in other similar programs in the pipeline.
  • Annual Broad Institute CANCER CELL LINE – Dependency Map Meeting attendance
    for onsite collaboration and understanding of the status/progress of LMS Cell Lines funded by the NLMSF  for repurposed drugs and CRISPR screenings to advance and accelerate global research: https://leiomyosarcoma.info/cancer-cell-line-project/
  •  Sarcoma Coalition –  Steering Committee  –   Revised Roundtable effort to work with 20 organizations to identify mutually agreed upon efforts to impact patient care and build awareness of Sarcoma on a national scale within the medical communities.
    mutually agreed upon initiatives that can advance patient care and sarcoma awareness throughout the medical community.   Recruitment of new sarcoma organizations continues and collaborations impact the patient-caregiver communities.
    *  Annual requests to Congress continue –  to establish a successful National LMS Awareness Day again –  to replicate the NLMSF’s success of Congressional approval for JULY 15, 2016  National LMS Awareness Day.  Hoping for 2020 to be the year!
  •  State Cancer Caucus involvement to continue the momentum of LMS awareness.
  •  International organization collaborations / relationships continue for mutual sharing of patient advocacy ideas, collaborative efforts and mutual goals.

2 0 2 0:

  •  The NLSMF – SPAEN International Research Roundtable is on track
    with three important workgroups in place to address the areas of
    concern that will be impactful for future research /clinical trial focus.
    To date, there are 66 researchers from around the world as Roundtable
    members in support of this NLMSF concept/ initiative launched last year.
  • NEW:   The  PATIENT-CAREGIVER ADVOCACY NETWORK – https://nlmsf.org/patient-advocacy-peer-group-roundtable/

Patients and caregivers are on board to come to the Roundtable to discuss many areas of patient care that will result in FDA Listening sessions,  recommendations to the Research Roundtable membership/ oncology care teams, for consideration in the goal of improving standard of care beyond current NCCN Guidelines  – for LMS specifically.

  •  FOUR  grant-funded Patient – Caregiver LMS Education Programs scheduled.  Each program will be announced as the dates approach.
  • Work continues with the Research Patient Advocacy Council and the Sarcoma Coalition (Steering Committee);  Congressional support coordination for national LMS recognition.
  • Research Project Funding continues with earmarked projects for 2020.  ALL DONATIONS RECEIVED ARE DIRECTED TO RESEARCH ONLY – Your  “Investments” in action!

NEW:  CIRCLE OF GIVING –  Community coming together for LMS Research funding support –https://nlmsf.org/donate-leiomyosarcoma-research/  – An easy way to donate $1 or

more and make collective contributions very impactful from any community setting /affiliation involvement by patients, families, friends/clubs/workplace/schools, etc.     

  • New initiatives – to be announced as more new collaborations continue to be finalized.  The NLMSF has been invited by one of our Roundtable members,  to an important initiative that will be announced in the future and possibly be helpful to the Sarcoma Coalition.

We continue to be so very grateful for the collective support of the LMS Community by being keenly aware of  the Foundation’s  chosen manner of genuineness and integrity in carrying out its mission and purpose  – an important cornerstone of community Trust for the NLMSF.

The volunteers that comprise the NLMSF are passionate patients and caregivers that mirror the LMS Community, working hard to deliver promised results 24/7 in every corridor of representation possible.  They understand what patients and caregivers are going through because they have already traveled the same road.

The ever-present goal is to offer the deserved enhancement of the patient/caregiver experience through the continuous support and assistance follow-through every day of the year. Direct contact with patients and their families has been so rewarding for all. Leading the way to increasing and coordinating collaborations that amplify resource assistance for patients and families has been a guide for others to follow in our footsteps to this day.

We value collaboration to enhance a high level of support and assistance delivery, and the results reported reflect this important core value of the NLMSF because YOU Matter to US!

  May 2020 be a year of new beginnings / new possibilities for all.
 ANNIE ACHEE  and the Entire  N L M S F  T E A M  Volunteers
Honoring Patients/Caregivers/Researcher/Oncology Care Teams/Collaborators



Three  NLMSF Websites:  https://nlmsf.org, https://leiomyosarcoma.info   and  https://nlmsflifechange.com     

  CALL to Learn More about the NLMSF and join this Impactful/Passionate Team!

303  783-0924  /  303  808 – 3437