LMSdr’s most important accomplishment has been to raise and grant $1 million for LMS research. True to its name, donations to LMSdr go directly to fund promising leiomyosarcoma specific research. There are no paid members or staff. The overhead costs are minimal since volunteers work out of their own homes. Donations are mostly raised by families affected by leiomyosarcoma. Some patient education costs are supported by private grants from sponsors.
LMS EDUCATIONAL CONFERENCES
The foundation has hosted three leiomyosarcoma conferences for patients and professionals. The first conference was held September 2013 in Aspen, Colorado at the Cooper Mountain Resort. The second conference was held in October 2014 in San Francisco, California. Our third conference was in April 2016 in New York City. Our next conference is November 9th, in Maui, Hawaii. DVDs of the presentations were made available by donors and are available on the LMSdr website.
PATIENT EDUCATION & SUPPORT
LMSdr launched our electronic newsletter, LMSeAlerts, in October 2013 which has a circulation of close to 2,500 subscribers. LMSeAlerts features new trials, research results and any kind of news about leiomyosarcoma and the community. Most popular is the feature of “Long Term Thrivers” and their stories, which gives hope to the newly diagnosed. Also started in October 2013 was the LMSdr closed Facebook group for survivors and loved ones to educate and support each other. Within two years, the LMSdr Facebook group grew to over 1,400 members. It is moderated by all volunteer leiomyosarcoma patients and caregivers.
LMSdr has partnered with the Life Raft Group (GIST) to provide My SIDE EQ – a Patient Side Effect Registry. Patients voluntarily record their side effects to their treatments, for others to research.
In 2013, LMSdr launched their private, confidential LMSarcoma Direct Research Foundation Facebook Group. Currently we have over 2500 patients and loved ones, offering support and information on LMS. Our Facebook group is moderated by volunteers who screen out spammers and insure that all posts are LMS related. It has become the number one source of LMS information online.
For the newly diagnosed patients, LMSdr Executive Director, Sharon Anderson MSW, has recorded our LMS Boot Camp webinars in June 2017. This webinar series covers the basics on what you need to know to help survive LMS, including: finding sarcoma centers, current treatment options, deciding on a treatment plan, managing your records, how to research, coping skills and special one just for uterine LMS.
In November 2015, LMSdr sponsored and trained volunteers as LMSdr 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.
In April 2015, LMSdr joined the RARE Foundation Alliance to collaborate with other nonprofits to make changes in the rare disease community.
LMSdr supports the campaign to ban uterine morcellation led by Dr. Hooman Norchasm and his wife and LMS patient, Dr. Amy Reed. Sharon Anderson and Scientific Advisory Board member Sarah Salem Robinson, testified at the FDA’s hearing in April 2014, alongside many other leiomyosarcoma patients who were victims of morcellation.
By May 2016, LMSdr had raised and awarded over $1,000,000 for leiomyosarcoma research. Much of the research has been conducted by Matt van de Rijn MD, PhD. Professor of Pathology at Stanford University. His research projects have included the molecular profiling and discovery of targets for LMS, the finding of three distinct molecular subgroups of LMS and indicated drug treatment, and the investigation of circulating LMS DNA; the purpose of the latter is to discover a practical diagnostic blood test, as well as to measure very early if a treatment is working. The discovery of the role of tumor macrophages driving tumor growth has led to the potential of an immunotherapy approach. For a list of all research funded by LMSdr please visit the Grants Awarded page.
LMSdr is proud to have formed collaborations in funding several LMS research projects with the Liddy Shriver Foundation.
Most of this work was made available through the collection of over 500 LMS tumor paraffin blocks and patient history, which was compiled between 2006 and 2015 by Sharon Anderson for Matt van de Rijn MD, PhD. at Stanford University. The paraffin block drive is an on-going project. The collection has been made available to the public and is regularly used by other researchers studying leiomyosarcoma.
In 2015, LMSdr sponsored a 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 and to measure the efficacy of chemotherapy earlier than other CT scans are able to.
In May 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.
LMS PATIENT REGISTRY
LMSdr launched an independent Leiomyosarcoma Patient Registry fall 2015, 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 Committee members wrote the leiomyosarcoma specific questionnaire under the direction of former Scientific Advisory 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.
The Scientific Advisory Committee members are qualified volunteers who review all grant requests and make recommendations to the Executive Director and President. They also lead various projects and are called on for their advice as needed. LMSdr’s representatives attend most sarcoma-related conferences, as well as others for rare diseases. Finally, the most recent scientific research advances for leiomyosarcoma are then reported in the LMSeAlerts newsletter and posted in the LMSdr Facebook Group.