Contents

Introduction 2024 In Review NLMSF Current Research Awardees Other Research Funding Commitments Repurposed Drug Initiative Other Collaborations Patient / Caregiver Resources Online Patient / Caregiver Programs Moving Forward in 2025

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.

Research Project: Establish an innovative platform utilizing advanced Artificial Intelligence techniques for the comprehensive characterization of uterine leiomyosarcoma.

Frederic Amant, MD, PhD

Professor of Gynecologic Oncology, University of Leuven, Belgium

Research Project: Enhancing the adaptive immune response in LMS tumors through P13K/mTOR inhibition may render them more receptive to ICB. Explore the immune-modulatory impacts of P13K/mTOR inhibitors on the tumor microenvironment (TME) and their capacity to overcome primary ICB resistance in LMS.

(The following two grants were awarded in 2023, with funding for 2023-2024)

Priya Chudasama, PhD

German Cancer Research Center, Heidelberg, Germany

Research Project: Spatial heterogeneity and therapeutic implications of activated telomere maintenance mechanisms in leiomyosarcoma.

Joanna Przybyl, PhD

McGill University, Montreal, Quebec, Canada

Research Project: Development of the multi-omic liquid biopsy assay for the pre-operative diagnosis of uterine leiomyosarcoma and benign leiomyoma.

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 through a website, a smartphone, or other mobile device.

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.

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 that offers DNA and RNA analysis, immune profiling, and treatment recommendations from one simple report and comprehensive multi-omics analysis, with patient support in the form of financial assistance. (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 — that is, cell lines derived from patients' tumors, which can be used by researchers. One focus of this work is to recruit patients to send tissue samples to the project.

  • In 2019, NLMSF made a funding commitment for three years for the Cell Line Dependency Map project to determine which drugs could be effective against LMS tumor cells.
  • In 2020, NLMSF made an additional funding grant for RNA sequencing of the 11 cell lines that have been developed so far to see if they represented the original tumor from which they were derived.

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, as well as informing LMS patients about the project and encouraging them to participate in it.

  • The Leiomyosarcoma Project is part of the larger Count-Me-In Project that enables patients to share their tissues, clinical information and voices to accelerate cancer research.
  • The project assembles and maintains patient-driven patient registries of rare cancers. The registries include all available clinical data from the patient's clinical course, such as treatment and pathology reports, genomic testing data, and imaging reports.
  • The Broad has received a significant funding grant from the NIH (National Institutes of Health) / NCI (National Cancer Institute) 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.

Sarcoma Coalition

The NLMSF is active in the Sarcoma Coalition, a nonprofit co-founded in 2017 by NLMSF board member Annie Achee. The Coalition works to foster collaborative sarcoma advocacy initiatives with both sarcoma-subtype organizations and pan-sarcoma organizations. During 2024, three new groups joined the Coalition, bringing the number of participating sarcoma advocacy organizations to 36.

ECOG-ACRIN

The ECOG-ACRIN Cancer Research Group is a network of nearly 1400 academic and community-based cancer centers and hospitals in the United States and around the world involved in designing and conducting biomarker-driven cancer research. The NLMSF contributes to the mission and goals of ECOG-ACRIN's sarcoma workgroup, cardiotoxicity workgroup, and patient advocacy workgroup.

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, patient-driven research initiatives to advance LMS research; and well-being resources

Social Media

The NLMSF maintains three Facebook pages and regularly posts to them and to other community Facebook pages to encourage conversation and connections in the patient and caregiver communities.

The LMS / Sarcoma Community Connection

At the end of 2024, the Foundation's biweekly e-newsletter, the NSMSF News Tracker, underwent a redesign and got a new name: the LMS / Sarcoma Community Connection. The newsletter alerts subscribers about upcoming virtual and on-site presentations; research updates; clinical trials; book recommendations; and tips for living with LMS.

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

This is an ad hoc program called on when patients or family members pose general questions (e.g., coping with side effects) to the NLMSF through our website or Facebook page. We refer such questions to one or more members of our Medical Advisory Panel, a group of clinical and research sarcoma and oncology experts (https://nlmsf.org/our-board/).

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. Members of the global research community speak about their current research initiatives, clinical trials, and treatment updates in progress, with the opportunity for patients / caregivers to ask questions. These presentations are also recorded and made available for later viewing. Find current and past programs here: https://nlmsf.org/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. NLMSF board members in attendance serve on various committees with clinical trial working groups and can convey valuable suggestions generated in this group to clinicians planning / running clinical trials.

Caregiving Counts Advocacy Network

This discussion group, held several times per year via Zoom, is focused toward caregivers but patients are encouraged to attend. Caregivers relatively new to LMS find it extremely helpful to hear from those who have been there before. (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 for treatment, questions to ask at appointments, how to talk to the oncology care team, and more. This group is useful to patients in all phases of diagnosis and treatment.

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. A plan helps patients and their healthcare teams manage ongoing healthcare needs, address any potential long-term side effects, and ensure a smooth transition into post-treatment life. (Notes from each meeting, podcasts, and handout materials are available.)

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, throughout the course of treatment and afterwards.

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. The group also welcomes family members who are in crisis with facing the day-to-day challenge of a loved one's difficult cancer journey and trying to build bridges of supportive communication.

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 Project: Pre-clinical Evaluation of Placental-Derived Natural Killer (NK) Cells to Target Leiomyosarcoma

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.