2024 Accountability Report
to the LMS Community
Celebrating 25 years of serving the LMS community with increased and deepened connections with the patient community and research community every single year along the way.
Contents
Introduction
The National Leiomyosarcoma Foundation (NLMSF) was established in 2001. Our work consists of the following:
- Funding LMS-specific research that advances the field of study and accelerates development of clinical trials and treatments.
- Supporting the LMS patient, family, and caregiver community through education, information sharing, resource assistance, and 24/7 direct phone support.
- Raising global, national, and community awareness of leiomyosarcoma.
- Addressing unmet needs in treatment, research, clinical trials, and care through the Foundation's International LMS Research Roundtable — collaborating with researchers, clinicians, partner organizations, and the LMS community to achieve meaningful progress.
We at the Foundation are most grateful to our donors, both in the United States and internationally, who have supported the Foundation's efforts to vet the most promising LMS research projects and fund them annually. The Executive Committee of the NLMSF conducts a comprehensive review of incoming research grant proposals in order to ensure that the donations are well placed in the selected research projects each year.
Read on for a summary of our efforts over 2024 and our continuing programs and new initiatives for 2025.
2024 In Review
NLMSF Current Research Awardees
(The following two grants were awarded in 2024, with funding for 2025-2026)
Marisa Nucci, MD
Division Chief, Perinatal Pathology, Brigham and Women's Hospital; Professor of Pathology, Harvard Medical School.
Frederic Amant, MD, PhD
Professor of Gynecologic Oncology, University of Leuven, Belgium
(The following two grants were awarded in 2023, with funding for 2023-2024)
Priya Chudasama, PhD
German Cancer Research Center, Heidelberg, Germany
Joanna Przybyl, PhD
McGill University, Montreal, Quebec, Canada
Other Research Funding Commitments
NLMSF Early Career Award 2024
This award, launched in 2024, is for fellows and post-doc specialists; it provides a travel stipend to attend the Research Roundtable meeting and contribute to a Workgroup of choice, and to present during the Roundtable. The Awardee will be mentored by the Workgroup leader. Our 2024 awardee was Dr. Jeff Ryts.
Funding Support for the SARC Catalyst Program for Young Researchers
This program, spearheaded by SARC (Sarcoma Alliance for Research through Collaboration) provides awardees with financial support for small-scale sarcoma research projects as well as monthly expert coaching sessions. The NLMSF contributes to the financial support of young researchers involved in the Catalyst program.
The NLMSF-SPAGN International LMS Research Roundtable
The NLMSF, together with the organization now known as SPAGN (Sarcoma Patient Advocacy Global Network), launched this effort in 2019, convening a body of research clinicians, pathologists and lab colleagues to focus on the future of leiomyosarcoma investigational research and clinical trials. Now in its seventh year, this group met in Toronto in September 2024, with over 60 researchers in attendance.
The Research Roundtable Working Groups are:
- LMS Cell Lines / PDX Models / Proteomics and Multiomics
- Gynecologic Issues (STUMP)
- Clinical Trial Assessments
- Imaging Strategies and Radiomics
Learn more about the Research Roundtable at https://leiomyosarcoma.info/irr-forum/
Repurposed Drug Initiative
As drug costs continue to escalate, the Foundation has established the NLMSF Repurposing Drug Research Initiative to explore possible new leiomyosarcoma and sarcoma treatment options on behalf of the LMS patient community. The NLMSF has collaborated for several years with some of these organizations and, in 2024, expanded the reach of this initiative through additional partnerships.
The Cell Line / Omics Workgroup of the NLMSF-SPAGN International LMS Research Roundtable
Matt Hemming, MD, PhD, UMass Chan Medical School
MD Anderson Cancer Center
Wontong Yao, MD, PhD, of the Yao Research Lab
The Tracer Project
T. Gujral, PhD, Fred Hutchinson Cancer Center
CURE ID Drug Repurposing Collaboration
Heather Stone, PhD, Health Science Policy Analyst, FDA. CURE ID is an internet-based repository that allows the global community to report novel uses of existing drugs for difficult-to-treat diseases. https://www.fda.gov/drugs/science-and-research-drugs/cure-id-app-lets-clinicians-report-novel-uses-existing-drugs
The Repurposed Drug Task Force, University of Michigan Multidisciplinary Sarcoma Clinic
Denise Reinke, MS, NP, MBA. Drug Repurposing at the University of Michigan brings sarcoma groups together to explore strategies for engaging in repurposed drug research. https://drugrepurposing.umich.edu/
Other Collaborations
In 2024, the Foundation embarked on a new collaboration:
Huntsman Cancer Institute Heredity Genomic Counseling Project
The National LMS Foundation has partnered with the Huntsman Cancer Institute at the University of Utah for a heredity genomic counseling project, a patient-driven data collection initiative launched in 2024: Genetics Attitude Questionnaire / Cuestionario de actitud genética
The NLMSF team and the Huntsman Cancer Institute genetic counselors are working together to understand what LMS patients think about the heritability of LMS and to explore their interest in genetic testing. The data collected and analyzed from this initiative will impact future NCCN (National Comprehensive Cancer Network) treatment guidelines, with such testing becoming incorporated into standard of care for the future.
Continuing Collaborations
Boston Gene
BostonGene is a company that provides molecular and immune profiling to assist in treatment selection for patients with cancer. The NLMSF collaborates with BostonGene to provide information to patients regarding a new tumor portrait testing platform. (See a YouTube project overview for patients.)
Cell Line Development at the Broad Institute (Harvard / MIT)
Since 2018 the NLMSF has been collaborating with the Broad Institute to develop verifiable LMS cell lines. In 2019, NLMSF made a funding commitment for three years for the Cell Line Dependency Map project. In 2020, NLMSF made an additional funding grant for RNA sequencing of the 11 cell lines that have been developed so far.
Koch Research Institute / Rare Cancer Research Foundation
The NLMSF encourages patients having surgery to donate fresh tumor tissue to the Boehm Lab at the Koch Institute for Integrative Cancer Research at MIT through www.pattern.org, an initiative of the Rare Cancer Research Foundation.
LMS Count-Me-In Project at the Broad Institute (Harvard / MIT)
The Foundation continues to work closely with the Broad Institute and the Dana-Farber Cancer Institute on this project. The Leiomyosarcoma Project is part of the larger Count-Me-In Project. The Broad has received a significant funding grant from the NIH / NCI to develop new registries for leiomyosarcoma and osteosarcoma.
Pan-Sarcoma Organizations Working Groups
SARC (Sarcoma Alliance for Research through Collaboration)
SARC is a U.S.-based nonprofit cancer research organization. NLMSF board members serve on SARC's Research Advocacy Committee. Learn more
Sarcoma Coalition
The NLMSF is active in the Sarcoma Coalition, a nonprofit co-founded in 2017 by NLMSF board member Annie Achee. During 2024, three new groups joined the Coalition, bringing the number of participating sarcoma advocacy organizations to 36. Learn more
ECOG-ACRIN
The ECOG-ACRIN Cancer Research Group is a network of nearly 1400 academic and community-based cancer centers and hospitals. The NLMSF contributes to the mission and goals of ECOG-ACRIN's sarcoma workgroup, cardiotoxicity workgroup, and patient advocacy workgroup. Learn more
Patient / Caregiver Resources
In 2024 we continued our ongoing work through the following programs:
Three websites providing information
Patient and caregiver resources; research updates, clinical trials; and well-being resources
Social Media
The NLMSF maintains three Facebook pages and regularly posts to them and to other community Facebook pages.
The LMS / Sarcoma Community Connection
At the end of 2024, the Foundation's biweekly e-newsletter underwent a redesign and got a new name: the LMS / Sarcoma Community Connection.
LMS Lifeline Buddy Program
Peer-to-peer patient and / or caregiver matching for one-on-one support.
24/7 Lifeline Support Hotline
303-808-3437
The Foundation's support hotline is available 24 hours a day, 7 days a week.
Connect with a Clinician Program
We refer questions to one or more members of our Medical Advisory Panel. Our Board / Medical Advisory Panel
On-site Patient Family Programs at Sarcoma Centers
The NLMSF presents annual educational, in-person sessions at sarcoma centers of excellence in several states across the nation.
Online Patient / Caregiver Programs
LMS Research in Review
Virtual discussions with experts are presented throughout the year via Zoom. Find current and past programs here: Events
Peer-to-Peer Patient Network
Online discussions are held throughout the year on topics that allowed for sharing patient perspectives but without clinical scientists present. These sessions are not recorded.
Patient Perspectives in Clinical Trials
This discussion group meets on Zoom several times per year to discuss patient and caregiver experiences with clinical trials and suggestions on how trials could be improved.
Caregiving Counts Advocacy Network
This discussion group, held several times per year via Zoom, is focused toward caregivers but patients are encouraged to attend. (Includes podcasts and handout materials.)
THE ABC's of the LMS Diagnosis and Treatment Journey
This program / discussion group for new and existing patients and their families is held via Zoom several times per year. We talk about initial steps for newly diagnosed patients, finding a sarcoma center, questions to ask at appointments, and more.
Survivorship Care Planning Clinic
This occasional online discussion group covers the significance, objectives, and usefulness of having a survivorship care plan in place both during and after cancer treatment.
Wellness – Integrative Medicine Guidance for Patients
This series was new in 2024. It incorporates nutrition, exercise, and psychosocial well-being and includes survivorship peer clinic sessions for patients.
Open to Hope – Crisis and Bereavement Group
This discussion group, scheduled as needed, supports family members left behind in grief, depression or anxiety. It offers support in "picking up the pieces" and rebuilding lives, including with children.
Moving Forward in 2025
We are in our 25th year of serving the LMS community, having increased and deepened connections with the patient community and research community every single year along the way. The following are the Foundation's activities as we proceed through 2025:
2025 NLMSF Research Awardee
Robert Canter, MD
Department of Surgery · UC Davis, Sacramento, CA
Research Description: To optimize the therapeutic efficacy of placental-derived natural killer (NK) cells to pave the way for their use against leiomyosarcoma (LMS) in the clinic. Key features include evaluating the hypothesis that placental-derived NK cells expand more and live longer compared to peripheral blood NK cells, and that they also show sustained expression of CD16, a key marker allowing NK cells to kill tumor cells.
Other Research Funding Commitments
NLMSF Early Career Award for 2025
Our 2025 awardee will be announced later this year. This award, targeted to fellows and post-doc specialists, covers a travel stipend to attend the 2025 Research Roundtable meeting, which will be focused on the consensus paper.
NLMSF Faculty Recognition Award for 2025
This non-monetary award, which is being launched in 2025, will be granted to a junior faculty member within 5-7 years from initial faculty position. The awardee will be integrated into the International Research Roundtable workgroups.
Patient / Caregiver Resources
Three websites providing comprehensive information
24/7 Lifeline Support Hotline
303-808-3437
Available 24 hours a day, 7 days a week
LMS Lifeline Buddy Program
Peer-to-peer patient and/or caregiver matching for one-on-one support.
NOTE TO OUR COMMUNITY:
Your contributions to the patient-driven research of patient data collection and collaboration through the Dana Farber COUNT ME IN PROJECT and the RARE CANCER RESEARCH FOUNDATION for tumor tissue collection for the Broad and Koch Institutes make all the difference in advancing research for LMS.