2023 Accountability Report
Reflecting on our 23rd year of advancing leiomyosarcoma research, patient support, and community advocacy. Celebrating achievements in 2023 and outlining our strategic goals for 2024.
THE NATIONAL LEIOMYOSARCOMA ACCOUNTABILITY REPORT
A YEAR IN REVIEW
LOOKING BACK at 2023 - MOVING FORWARD IN 2024 IN THE QUEST FOR THE CURE
Since its inception in 2001, the National Leiomyosarcoma Foundation (NLMSF) has continued to provide important patient and caregiver resources, information assistance, advocacy, representation, and research support to advance and accelerate patient outcomes in diagnosis and treatment.
Ongoing annual funding for leiomyosarcoma (LMS) basic and translational research supports early-career investigators interested in sarcoma, especially leiomyosarcoma, as one of three larger patient-populated sarcoma subtypes. In addition to granting direct funding to research programs, the Foundation supports LMS-specific and sarcoma research through collaborations with other groups, ensuring that patient perspectives are included.
The Foundation also coordinates virtual and on-site patient/family education programs to build awareness of the disease in communities globally.
2023 IN REVIEW
Research Funding Support
During 2023 the Foundation provided the following funding to support the patient and research communities:
Annual Research Awards
For promising LMS-specific researchThe NLMSF awarded funding for 2023-2024 to Priya Chudasama, PhD - German Sarcoma Research Group, Heidelberg, Germany, and Joanna Przybyl, PhD - McGill University, Montreal, Canada for the most promising LMS-specific research as vetted by the Foundation's Executive Committee panel of reviewers.
LMS Research Project (SPORE)
University of MichiganThe National Cancer Institute (NCI) has established various SPORE programs (Specialized Programs of Research Excellence) throughout the US in an effort to reduce cancer incidence and mortality and improve survival and quality of life for cancer patients. This SPORE at the University of Michigan is sponsored by the NLMSF, Rein in Sarcoma, and the Sarcoma Foundation of America. We have committed five years of funding support to this project, which focuses on understanding the genetics and genomics of leiomyosarcoma. As of 2022, the program has also included Career Enhancement Program and Developmental Research Program award support to early-career sarcoma research investigators from sarcoma centers of excellence across the USA.
Dr. Mitch Achee continues to serve on the External Advisory Board of this SPORE, bringing the patient perspective to this program. Congratulations to Dr. Scott Schuetze and the team of researchers who continue to work together to better understand LMS with the goal of improving outcomes for those facing this disease. The National Leiomyosarcoma Foundation is proud and honored to provide financial support to this SPORE.
NOTE TO OUR COMMUNITY: Thank you to all who continue to help support this NLMSF five-year commitment, which began in 2022. Without your support we could not be partnering to fund this project that is so noteworthy it has captured the support of the NIH / NCI.
To learn more about the NCI (National Cancer Institute) Translational Research Program (SPORE), see https://trp.cancer.gov/
International Leiomyosarcoma Research Roundtable
NLMSF/SPAEN CollaborationTogether with SPAEN (Sarcoma Patients EuroNet), formerly SPAGN (Sarcoma Patients Advocacy Global International Leiomyosarcoma), the NMLSF launched this effort in 2019. This body of research clinicians, pathologists and lab colleagues, all dedicated to the mission of focusing on the future of leiomyosarcoma investigational research and clinical trials, is now in its fifth year running and is 140+ members strong.
Research Roundtable Working Groups:
- 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/
Community Outreach
Social Media & Web PlatformsKatie Almaleh, the NLMSF Community Outreach Director, continued to support enhanced communication through our Facebook groups, Instagram, Twitter, and other web platforms.
To learn more about how you can help expand our research support efforts, contact: info@nlmsf.org
SARC - SASS Program
Research Collaboration FundingSupported the new Sarcoma Advances in Sarcoma Science (SASS) program, which encourages a collaborative research focus on mechanistic science to define research opportunities, promoting a Think Tank approach to key challenges in the science of sarcomas and new therapeutic challenges.
Collaborations & Research Advocacy
Broad Institute Cell Line Development
Harvard/MIT Research PartnershipSince 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). A 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. (Cell lines that do not represent the original tumors have no value for research.) If validated, these cell lines will then be made available to researchers throughout the world to use in their LMS research.
The NLMSF continues to encourage 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. Please sign up at least a week in advance of surgery in order to allow pattern.org to have time to coordinate with the medical center personnel.
Please direct any questions regarding tissue donation to info@pattern.org; who will respond to your inquiry quickly.
LMS COUNT-ME-IN Project
Broad Institute (Harvard/MIT)Our Foundation has collaborated with the Broad Institute and the Dana-Farber Cancer Institute on this project since its inception, with an NLMSF board member serving on the development committee, and we continue to work to inform LMS patients about the project and encourage 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.
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.
Pan-Sarcoma Organizations & Working Groups
SARC (Sarcoma Alliance for Research through Collaboration)
SARC is a U.S.-based nonprofit cancer research organization. NLMFS board members serve on SARC's Research Advocacy Committee.
Sarcoma Coalition
The Sarcoma Coalition was co-founded in 2017 by NLMFS board member Annie Achee and representatives from two other groups, SARC and Rein In Sarcoma. Ms. Achee now serves on the steering committee for the Coalition. The Coalition works to foster collaborative sarcoma advocacy initiatives with both sarcoma-subtype organizations and pan-sarcoma organizations. The Coalition now has 33 sarcoma advocacy organization members and a newly created Advisory Panel established by the NLMSF.
Clinical Trial Pan-Cancer Organization
Foundation members serve on the Patient Advocate Research Committee and the Sarcoma, Imaging and Cardiotoxicity Workgroups for this clinical trials-focused organization.
The Repurposed Drug Task Force
University of Michigan Multidisciplinary Sarcoma ClinicFoundation members serve on this task force. The Repurposed Drug Task Force is investigating the efficacy of repurposing drugs previously approved for conditions other than cancer for use in LMS.
International Guidelines Harmonization Group - GIST Task Force
Board member Dr. Mitch Achee continues to serve on this Task Force.
Attendance at Annual Sarcoma Meetings
LMSF representatives attend sarcoma meetings throughout the year in the US and abroad to meet with the research community, especially the physician scientists supporting the Foundation's Research Roundtable, with involvement in the four workgroups within the Roundtable. This puts us in a position to convey news and developments to our community.
In 2023, the NLMSF was represented at the ASCO (American Society of Clinical Oncology) meeting.
International Cooperation
Advocacy groups from around the world share research results, clinical trials, and a variety of initiatives throughout the year to support patients and inform them about all diagnostic and treatment options.
Patients and caregivers from around the world are welcome in the Foundation's private Facebook groups, email communications, YouTube webinar educational programs and more.
Patient/Caregiver Resources
In 2023 we continued our ongoing work through the following programs:
Websites
Three websites providing information on 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 and regularly posts to various Facebook pages and an Instagram account to encourage conversation and connections in the patient and caregiver communities.
The NLMSF News Tracker
This biweekly e-newsletter alerts subscribers about upcoming virtual and on-site presentations; research updates; clinical trials; book recommendations; tips for living with LMS; and more.
LMS Lifeline Buddy Program
Peer-to-peer patient matching for one-on-one support, including caregiver matching for coping support.
24/7 Lifeline Support Hotline
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. We refer such questions to one or more members of our Medical Advisory Panel, a group of clinical and research sarcoma and oncology experts.
Visit our Medical Advisory Board page to learn more about our expert panel. We do our best to get accurate and up-to-date information for anyone who makes such an inquiry.
On-site Patient/Family Programs
Sarcoma Centers of ExcellenceThe NLMSF presents annual educational, in-person sessions at sarcoma centers of excellence in several states across the nation.
Online Patient/Caregiver Programs
The ABC's of the LMS Journey
This program / discussion group for new and existing patients and their families is held via Zoom every other month. 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.
LMS LIVE CONNECT - RESEARCH IN REVIEW
In this quarterly series, members of the global research community speak directly to patients about their current research initiatives, with the opportunity for patients to ask questions.
CLINICAL TRIAL Patient Perspective Advocacy Forum
This bimonthly discussion group meets on Zoom 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 every other month 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.)
SURVIVORSHIP CARE Planning Clinic
Launched in December 2023, 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 to help 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.
Each session includes notes, podcasts, and handout materials for attendees.
FAMILY SUPPORT Crisis and Bereavement Group
This discussion group, scheduled from time to time 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 2024
We are in our 24th 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 goals as we head into 2024:
Goals
Annual Research Awards
Grant annual research awards for the most promising LMS-specific research as vetted by the Foundation's Executive Committee panel of reviewers.
2024-2025 Funded Researchers:
- M. Nucci, MD, Dana Farber Cancer Institute, Boston
- F. Amant, MD, PhD, University of Leuven, Belgium
NLMSF Early Career Funding Program
This program will enhance participation by early-career researchers in the Research Roundtable workgroups and SASS Program with the aim to incentivize consideration of sarcoma oncology career focus. The SASS program is headed by Dr. Jonathan Fletcher of the Sarcoma Alliance Through Research and Collaboration (SARC), for the purpose of fostering sarcoma therapies by advancing both mechanistic science and creative therapeutic strategies. The FDA and the NCI are participants in this new initiative as well as physician-scientists and scientists in sarcoma research.
SPORE LMS Research Project
Continue funding support for the SPORE LMS Research Project. The NLMSF's five-year funding commitment includes all the components of the program listed earlier, including the Career Enhancement Program and Developmental Research Program, launched in 2022, in which support is awarded to several early-career sarcoma research investigators connected to the project.
Cell Line Development Collaboration
Broad Institute (Harvard/MIT)Continue support for the Cell Line Development Collaboration at the Broad Institute. Collaboration with the cell line project at the Broad continues through the LMS Cell Lines / PDX Models / Proteomics and Multiomics Working Group of the NLMSF/SPAEN Research Roundtable. In addition, NLMSF funding continues for repurposing drug screening and tumor tissue processing.
SASS Program Support
Continue the Sarcoma Advances in Sarcoma Science (SASS) program encouraging collaborative research and a Think Tank approach, as well as the SASSY Program, which further supports young investigators as part of the SASS program.
MD Anderson Patient Stakeholder Panel
Collaborate with MD Anderson Cancer Center on a Patient Stakeholder Panel for their Shorter-course Multi-Arm Radiation Therapy study for soft tissue sarcoma (SMART-sarc).
This collaboration will help ensure patient perspectives are incorporated into the study design and implementation.
International LMS Research Roundtable
6th Annual - 2024Organize and host the 2024 International LMS Research Roundtable, working with the four workgroups to enhance development and progress through the Roundtable's 2021 "Unmet Needs" focus research publication.
Clinical Trials 101 Panel Discussion
Launch a "Clinical Trials 101" Panel Discussion with Physician Scientists to address patients' concerns and dispel myths about clinical trial participation. This will allow patients and families to better understand the process and enhance communications between trial administrators and patients.
This is especially important now that the recent trend is to discuss clinical trials with patients sooner after diagnosis, if appropriate, rather than later.
Circle of Hope Nutritional Patient Panel
Organize a Circle of Hope Nutritional Patient Panel to evaluate the possibility of launching an ongoing nutritional program for LMS patients.
The Golf Ball Project
Expand and promote the "Golf Ball Project" in coordination with the Sarcoma Coalition and Dr. Grimer in the UK to build and expand information/awareness about lumps and bumps that need to be further evaluated and not merely dismissed as benign cysts or lipomas.
Although the Golf Ball Project addresses growths that are the size of a golf ball, lumps and bumps of any size can be problematic and need to be evaluated through biopsy and/or imaging.
Patient Representation
Foundation board members will continue to serve as patient representatives, representing the patient community in providing patient perspectives through the affiliations we hold to various sarcoma research workgroups and related groups, and through our Sarcoma Coalition Steering Committee leadership.
Patient/Caregiver Programs
Continue all the Foundation's Patient/Caregiver Programs with the robust series of Zoom presentations, meetings and discussions for patients and caregivers as outlined in the 2023 Review.
These programs include bringing interesting and pertinent researchers to our community to address the "what should patients know" about the disease, treatment side effects to be mindful of, and new treatments on the horizon.
Sarcoma Coalition Leadership
36 Member OrganizationsContinue to guide the Sarcoma Coalition of 36 organizations representing various sarcoma subtypes. The NLMSF will be adding two more sarcoma organizations to the Coalition this year and will work with the Coalition to produce its Listen and Learn Series.
The Coalition is also part of the SARC Research Advocacy Council meetings, providing a unified voice for sarcoma patients.
NLMSF LMS Research Funding in 2024
LMS SPORE PROJECT
NIH / University of MichiganFunding from the NLMSF and other funders is explained in the Research Funding Support section above.
Summary of project content: The Leiomyosarcoma SPORE includes three projects, three cores (biospecimen, data analysis and administration), and two programs (career enhancement and developmental research).
Three Overarching Projects:
- Identify and exploit genomic vulnerabilities in leiomyosarcoma, targeting DNA repair pathway
- Study the genetic epidemiology of leiomyosarcoma, defining the risk for cancer in families with cancer predisposition syndromes such as Li-Fraumeni Syndrome
- Develop new biomarkers to assess more quickly if a new therapy has benefit
Second Year Funded Research
Previously Awarded GrantsPriya Chudasama, PhD
German Sarcoma Research Group, Heidelberg, GermanyResearch project: Spatial heterogeneity and therapeutic implications of activated telomere maintenance mechanisms in leiomyosarcoma.
Joanna Przybyl, PhD
McGill University, Montreal, CanadaResearch Project: Development of the multi-omic liquid biopsy assay for the pre-operative diagnosis of uterine leiomyosarcoma and leiomyoma.
Newly Awarded Grants
Funding for 2024-2025M. Nucci, MD
Dana-Farber Cancer Institute, BostonDr. Nucci is Chief of Perinatal Pathology at Brigham and Women's Hospital and Professor of Pathology, Harvard Medical School.
Research Project: Establish a cutting-edge platform for the characterization of uterine leiomyosarcoma utilizing advanced AI techniques. This involves the integration of genetic and histology markers. Delve into the intricate relationship between genetic markers, histology, and disease outcomes to develop an AI model that enhances the prediction of recurrence for uterine LMS patients.
F. Amant, MD, PhD
University of Leuven, BelgiumDr. Amant is 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, a downstream target of the P13K/mTOR pathway. This approach holds promise as a potential predictive biomarker for response. Investigate the immunomodulatory impacts of P13K/mTOR inhibitors on the Tumor Microenvironment (TME) and their capacity to overcome primary ICB resistance in LMS.
Integrating humanized PDX models of LMS with immune checkpoint inhibition unveils the intricate TME remodeling dynamics triggered by P13K/mTOR inhibition and/or PD-I blockade in LMS.
These two researchers will present insights into their research projects in the LMS LIVE - RESEARCH IN REVIEW series for 2024.
View LMS LIVE Program Details »