2025 Accountability Report
to the LMS-Sarcoma Community
2025 in review . . . moving forward in 2026. Research funding, community support, and collaborations that keep LMS research moving when other funding is paused or delayed.
Contents
Introduction
Since 2001, the National Leiomyosarcoma Foundation (NLMSF) has been working to:
- Fund LMS-specific research to advance the field of study and accelerate development of clinical trials and treatments.
- Support the LMS patient, family, and caregiver community through education, information sharing, resource assistance, and 24/7 direct phone support.
- Raise global, national, and community awareness of leiomyosarcoma.
- Address unmet needs in treatment, research, clinical trials, and care through the Foundation's International LMS Research Roundtable, in which researchers, clinicians, partner organizations, and the LMS community collaborate to achieve meaningful progress.
Research funding is the backbone of transforming patient treatment and, ultimately, survivorship. At a time when much research funding has been paused or delayed, philanthropic support is more critical than ever to keep LMS research moving forward.
New drug discoveries are being tested all the time, but it takes money to continue the research. We aim to fuel the future of research breakthroughs for more options besides the 40-year-old drugs that have been relied upon for years for LMS treatment. Repurposing drug discoveries is also an important focus of this Foundation.
The power of people coming together is what makes all the difference. Together with the LMS-sarcoma community, we continue to move forward to pursue these objectives.
2025 In Review
NLMSF 2025 Research Awardees
The following grant was awarded in 2025, with funding for 2026–2027
Robert J. Canter, MD
Chief, Dept. of Surgery, UC Davis Comprehensive Cancer Center, Sacramento, CA
Funding begins in 2026.
Continuing Research Funding (2025)
The following grant was awarded in 2024, with one-year funding during 2025
Everett Moding, MD
Physician-scientist, Department of Radiation Oncology, Stanford University — with Maggie Zhou, MD, instructor in the Division of Oncology at Stanford. Special LMS project associated with the SARC Catalyst Program.
Co-funded by NLMSF and the LMS Support and Direct Research Foundation; administered by SARC (Sarcoma Alliance for Research through Collaboration).
The following two grants were awarded in 2024, with funding for 2025–2026
Frederic Amant, MD, PhD
Professor of Gynecologic Oncology at the University of Leuven, Univ. Hospitals Leuven, Belgium
First year of 2-year funding.
Marisa Nucci, MD
Division Chief, Perinatal Pathology, Brigham and Women's Hospital; Professor of Pathology, Harvard Medical School, Boston, MA
First year of 2-year funding.
The following two grants were awarded in 2023, with funding for 2024–2025
Priya Chudasama, PhD
German Cancer Research Center, Heidelberg, Germany
Second year of 2-year funding.
Joanna Przybyl, PhD
McGill University, Montreal, Quebec, Canada
Second year of 2-year funding.
Other Research Funding Commitments (2025)
The NLMSF-SPAGN International LMS Research Roundtable
The NLMSF, together with the globally based organization now known as SPAGN (Sarcoma Patient Advocacy Global Network), launched this effort in 2019. The project engages a body of research clinicians, pathologists and lab colleagues to focus on the future of leiomyosarcoma investigational research and clinical trials, with workgroup communications throughout the year and an annual meeting of the entire group. Now in its eighth year, this group met in Berlin in October 2025, 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 Assessment
- Imaging Strategies and Radiomics
Learn more about the Research Roundtable.
NLMSF Early Career Award 2025
This award, also recognized as the Peer Faculty Recognition Award, is presented annually to emerging researchers in the leiomyosarcoma field. It provides a travel stipend to attend the Research Roundtable meeting, contribute to a workgroup of choice, and present during the Roundtable. The awardee is mentored by the workgroup leader. The 2025 awardee was Dr. Ryan Denu, MD, PhD, MD Anderson Cancer Center.
NLMSF Faculty Recognition Award
In 2025, NLMSF launched this non-monetary award, which 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. The first award will be presented in 2026.
SARC Catalyst Program: Young Researcher Travel Award
Keila E. Torres, MD, PhD, MBA, FACS, is the founder and leader of the SARC Catalyst Program, co-led with SARC's Chief Scientific Officer Jonathan Fletcher, MD. The NLMSF provides funding annually to support a young researcher in attending and presenting at the meeting. The 2025 Young Researcher awardee was Everett Moding, MD, Stanford University; this was in connection with a research grant to Dr. Moding, described above.
SARC SASS Program's Young Investigator Award
Beginning in 2023, the NLMSF has supported SARC's SASS (Strategic Advances in Sarcoma Science) program by supporting young investigators through the competitive SASS program, which features collaborative research and a Think Tank approach at a conference at the National Institutes of Health. NLMSF's award goes to a fund administered by SARC.
University of Michigan — LMS SPORE Project
The Leiomyosarcoma SPORE (Specialized Programs of Research Excellence) is a multi-institutional, international research program led by the University of Michigan Rogel Cancer Center. Funded by the National Cancer Institute (NCI) in 2022, this landmark grant brought together leading sarcoma centers across the U.S., Canada, and Australia to advance understanding of LMS genetics, biology, and therapeutic approaches. The year 2025 was the fourth year of our five-year funding commitment, alongside partners including Rein in Sarcoma and the Sarcoma Foundation of America. Research priorities include identifying genomic vulnerabilities in LMS, studying genetic epidemiology and cancer predisposition syndromes such as Li-Fraumeni Syndrome, and developing biomarkers to assess treatment response. NLMSF Board Member Dr. Mitch Achee serves as Patient Advocate representative on the External Advisory Committee of this project.
Repurposing Drug Initiative (2025)
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 2025, 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
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. Learn more
MD Anderson Cancer Center
Wontong Yao, MD, PhD, of the Yao Research Lab
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. Learn more
The Tracer Project
T. Gujral, PhD, Fred Hutchinson Cancer Center
Other Collaborations (2025)
In 2025, the Foundation embarked on a new collaboration:
Dr. David Liebner — PCORI Grant Application
Dr. David Liebner, James Cancer Center, Ohio, is working on a PCORI (Patient-Centered Outcomes Research Institute) grant application entitled: A randomized study evaluating neoadjuvant doxorubicin and ifosfamide versus no chemo in patients with resectable high-risk soft tissue sarcoma who are candidates for pembrolizumab and radiation. PCORI requires an engagement plan. The National LMS Foundation, Annie Achee, and the Sarcoma Coalition will lead that effort and oversee the activities of the advisory committee.
Research Initiatives
Boston Gene
Molecular and immune profiling to assist in treatment selection for patients with cancer.
Cell Line Development at the Broad Institute (Harvard / MIT)
Ongoing collaboration to develop verifiable LMS cell lines.
Count Me In — LMS Project
A patient-partnered research initiative of Dana-Farber Cancer Institute and the Broad Institute that the NLMSF has supported by encouraging patient participation. In December 2025 the data-collection phase successfully came to a close. In 2026, the project is going into an evaluation phase, for which the NLMSF has made a funding commitment. Learn more
Huntsman Cancer Institute Heredity Genomic Counseling Project
Continuing partnership on a patient-driven data collection initiative exploring LMS heritability and interest in genetic testing.
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 pattern.org, an initiative of the Rare Cancer Research Foundation.
PCORI Clinical Trial Advocacy Committee
NLMSF participation in patient-centered outcomes research advocacy.
Pan-Sarcoma Organizations / Working Groups
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. Foundation members serve on the Patient Advocate Research Committee and the Sarcoma, Imaging and Cardiotoxicity Workgroups for this clinical trials-focused organization. Visit website
Haystack Project / Rare Cancer Policy Coalition
In 2025, the NLMSF became a member of the Haystack Foundation's Rare Cancer Policy Coalition (RCPC), an organization dedicated to ensuring patient access to treatment options for those with rare and ultra-rare diseases. Visit website
NORD (National Organization for Rare Disorders)
Continued membership and collaboration with NORD on rare-disease advocacy and patient resources. Visit website
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 and participate in the SARC Sarcoma Center Directory Steering Advisory Committee. Visit website
Sarcoma Coalition
The NLMSF is active in the Sarcoma Coalition, a nonprofit co-founded in 2017 by NLMSF board member Annie Achee and representatives from two other groups, SARC and Rein In Sarcoma. Ms. Achee serves on the steering committee. The Coalition works to foster collaborative sarcoma advocacy initiatives with both sarcoma-subtype organizations and pan-sarcoma organizations. The NLMSF also helps the Coalition produce its Listen and Learn Series. During 2025, two new groups joined the Coalition, bringing the number of participating sarcoma advocacy organizations to 37. Visit website
Attendance at Annual Sarcoma Meetings
NLMSF representatives attend several annual sarcoma-specific meetings throughout the year to learn more about progress in LMS / sarcoma research and meet with the experts to discuss collaboration for future virtual and onsite patient-family forums.
Patient / Caregiver Resources (2025)
In 2025 we continued our ongoing work through many programs and channels. You can read a full list of our support groups, support services, and educational programs on Our Programs. Following are just a few of the highlights:
Three websites providing information
Patient and caregiver resources; research updates, clinical trials, patient-driven research initiatives; and well-being resources.
24/7 Lifeline Support Hotline
303-808-3437
The Foundation's support hotline is 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.
Connect with a Clinician Program
An ad hoc program that helps users connect with sarcoma and/or oncology experts who can answer questions about treatment options. Find a sarcoma specialist
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.
Weekly email newsletters
The LMS / Sarcoma Community Connection Newsletter and Sarcoma Snapshot News / Sarcoma Sound Bytes. Subscribe under "stay informed" on our home page.
Savor Health
Nutrition guidance to optimize health outcomes.
Pete's Blankets of Hope
Offers cancer patients colorful blankets made from donated yarn.
Imerman Angels
Guidance and resources, one-on-one support for cancer fighters and caregivers.
Online Patient / Caregiver Programs (2025)
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 on our website for later viewing. View programs
Clinical Trials: Patient/Caregiver Perspectives
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 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. ABC's of a new diagnosis
Survivorship Care 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 and continued in 2025. It incorporates nutrition, exercise, and psychosocial well-being and includes survivorship peer clinic sessions for patients, throughout the course of treatment and afterwards. Nutrition and physical activity
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 2026
We are in our 26th 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 2026:
NLMSF 2026 Research Awardee
The following grant is being awarded in 2026, with funding for 2027–2028
Brooke Howitt, MD
Associate Professor, Pathology Dept. — Stanford University, Stanford Health
Two-year funding begins in 2027.
Continuing Research Funding 2026
Funding continues for the following projects.
Awarded in 2025, with funding for 2026–2027
Robert J. Canter, MD
Chief, Dept. of Surgery, UC Davis Comprehensive Cancer Center, Sacramento, CA
Pre-Clinical Evaluation of Placental-Derived Natural Killer (NK) Cells to Target Leiomyosarcoma. See 2025 Research Awardees for the full description.
Awarded in 2024, with funding for 2025–2026
Frederic Amant, MD, PhD
Exploiting the Immunomodulatory Effect of PI3K/mTOR Inhibitors to Improve Immunotherapy Response in Leiomyosarcoma.
Marisa Nucci, MD
Exploiting High-throughput Deep Learning to Improve Uterine Leiomyosarcoma Diagnostics — Deep ULMS.
Other Research Funding Commitments 2026
In 2026, the NLMSF will continue its financial support of all the programs listed under Other Research Funding Commitments 2025, above. In addition:
Count Me In — LMS Project
The Count Me In (CMI) LMS Project, a project of Dana-Farber Cancer Institute and the Broad Institute, is a patient-partnered research initiative that the NLMSF has supported for several years by encouraging patient participation throughout our community. In December 2025 the data-collection phase of this project successfully came to a close. Now the project is going into an evaluation phase to analyze the rich dataset generated by this project. The NLMSF has committed to fund half of the projected cost of the evaluation phase, payable in installments. The purpose is to ensure this landmark LMS dataset can be fully analyzed and turned into actionable research findings for patients.
Repurposing Drug Initiative (2026)
In 2026, the NLMSF will continue its work on this initiative in collaboration with the same partners as in 2025.
Other Collaborations (2026)
In 2026, the Foundation will continue its work with the same projects and organizations as in 2025. In addition, the NLMSF will participate in a patient program for an innovative novel clinical trial for LMS being undertaken by Storm Therapeutics.
Patient / Caregiver Resources (2026)
In 2026, the Foundation will also continue all the support resources listed above, which are at the heart of its service and advocacy. Find a more complete list of these support resources on Our Programs.
New in 2026! Sharing Voices Community Forums
In early 2026 we introduced a new community forum: Sharing Voices — a password-protected site, moderated for kindness and safety, designed to be quieter and gentler than Facebook or other online forums. Not a medical forum, it is a place most for reflection, encouragement, and connection, shared by people who understand the leiomyosarcoma journey. There are two separate communication platforms on this forum:
- Patients Platform — for patients walking the LMS journey
- Caregivers Platform — for caregivers supporting someone on the LMS journey
Online Patient / Caregiver Programs (2026)
Throughout 2026, we will continue to present a robust series of Zoom meetings and discussions for patients and caregivers as in 2025, including bringing interesting and pertinent researchers to our community to educate patients about the disease, treatment side effects to be mindful of, and new treatments on the horizon. Upcoming programs can always be found on our home page.
New in 2026! Circle of Hope Community Roundtable
In January 2026, we launched this new initiative that harnesses patient power to come up with new ideas and insights to have an impact on the future of sarcoma diagnosis, treatment, care, and survivorship. This is a periodic online gathering focusing on how to address unmet needs in care and treatment. Addressing Patients' Common Challenges
New in 2026! Sarcoma Educational Forum
The NLMSF will be collaborating with the Dana-Farber Cancer Institute to develop this program.