What We Do
Leiomyosarcoma Support & Research Foundation (LMSDR) a charitable 501(c)(3) nonprofit. Your donation is tax deductible.
Since 2006, we are an all-volunteer staff of patients and caregivers, who are passionate about supporting others and helping researchers to find treatments that will work. We have as little expenses as possible, so nearly every penny goes to fund promising LMS research. We count on the generosity of people like you to help us. If you would like to get involved, please make a donation, organize a fundraiser or volunteer.
EDUCATIONAL CONFERENCES
2013 – 2019: The foundation has hosted leiomyosarcoma conferences for patients and professionals. We held conferences: 2013 Colorado, 2014 San Francisco, 2016 New York, 2018 Hawaii and 2019 Miami.
2020 – Present: LMSDR hosts many virtual webinars by esteemed sarcoma researchers and practitioners in response to the covid pandemic. See Videos
PATIENT EDUCATION & SUPPORT
2013: The LMSeAlerts newsletter has a circulation of 3,800 subscribers. LMSeAlerts features new trials, research results and any kind of news about leiomyosarcoma.
2018: Our Blog encourages contributions from the LMS community. Read about our “Long Term Thrivers” stories which gives hope to the newly diagnosed.
2020: The New Member Chat is offered virtually each month by a panel of long term survivors for those new to LMSDR and/or LMS.
COLLABORATION
2015: LMSDR joined the RARE Foundation Alliance to collaborate with other nonprofits to make changes in the rare disease community.
2016: LMSDR initiated international LMS Awareness Day – July 15th.
2017: LMSDR joined the Sarcoma Coalition to join forces with other sarcoma foundations.
2020: LMSDR become a member of Sarcoma Patients EuroNet Association (SPAEN), the international Network of Sarcoma Patient Advocates.
ADVOCACY
2015: Patient Advocate Training. LMSDR trained volunteers as LMS Patient Advocates to attend the Connected Tissue Oncology Society Conference (CTOS) in Salt Lake City, Utah. Each advocate participated in training webinars and completed their own advocate projects for the LMS community.
2020: “It Happened to Me!” Campaign. LMSDR collected and sent over 100 patients’ personal stories and letters to Vice President Kamala Harris and Congresswoman Yvette Clarke, requesting that leiomyosarcoma research and patient education be included in her bill, S.4397 - Uterine Fibroid Research and Education Act of 2020.
ANTI-MORCELLATION CAMPAIGN
2014: LMSDR supports the campaign to ban uterine morcellation led by Dr. Hooman Norchasm and his late wife and LMS patient, Dr. Amy Reed. Sharon Anderson and Science Advisory Board member Sarah Salem Robinson, testified at the FDA’s hearing, alongside many other leiomyosarcoma patients who were victims of morcellation. As a result, the FDA ordered a black box warning on all morcellation devices and restricted its use greatly, possibly helping thousands of women with uterine LMS now and in the future.
2021: The award winning documentary, Kicking the Hornets’ Nest, by Kyle Floyd was co-produced by LMSDR to help spread awareness and stop the tragedies of uterine morcellation.
RESEARCH GRANTS
2006 – Present: Over $1,500,000 raised and granted for leiomyosarcoma research. Please visit the Grants Awards page to read about the LMS research projects funded.
TISSUE & DATA COLLECTION
2006 – 2017: Over 500 LMS tumor paraffin blocks and patient histories, was collected by Sharon Anderson for Matt van de Rijn MD, PhD. at Stanford University. This tissue bank is used regularly by other researchers studying leiomyosarcoma.
2015: Blood donation drive for Dr. Kristin Gangoo and Dr. Matt van de Rijn at Stanford University Medical Center. The blood was collected for the purpose of studying leiomyosarcoma circulating DNA in an effort to find a diagnostic tool to distinguish uLMS tumors vs. benign fibroids preoperatively.
2017: LMSdr partnered with Rare Cancer Research Foundation’s (RCRF) Cell Line Project to help provide live fresh LMS tissue donations, for the purpose of starting new LMS living cell lines for researchers. This research opportunity is conducted by the Broad Institute of MIT and Harvard.
2021: In partnership with Broad Institute’s COUNT ME IN project, LMSDR will be helping LMS patients to donate their rare tumor tissue, blood, saliva and their LMS histories for researchers to study.
LMS PATIENT REGISTRY
2015: LMSDR launched an independent Leiomyosarcoma Patient Registry in collaboration with the Coordination of Rare Diseases at Sanford (CoRDS) based at Sanford Research, a not-for-profit research institution. The purpose of this registry is to help researchers study leiomyosarcoma and help identify potential participants for clinical trials of the newest treatments available. LMSDR’s Scientific Advisory Board members wrote the leiomyosarcoma specific questionnaire under the direction of former Science Advisory Board member, Dr. Meg Thorburg, an epidemiologist. All patient data is de-identified and anonymous. It is a free service for LMSDR patients and researchers worldwide.
