True to its name, donations to LMSdr go directly to fund promising LMS 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 LMS. Some patient education costs are supported with private grants from sponsors.
LMS EDUCATIONAL CONFERENCES
The foundation has hosted three LMS 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 last conference was April 2016 in New York City. DVDs of the presentations were made available by donors and can be ordered on the website.
PATIENT EDUCATION & SUPPORT
LMSdr launched our electronic newsletter, LMSeAlerts, in October 2013 which has a circulation of close to 2500 subscribers. LMSeAlerts features new trials, research results and any kind of news about LMS 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 Face Book group for survivors and loved ones to educate and support each other. Within two years, the LMSdr Face Book group grew to over 1400 members. It is moderated by all volunteer LMS patients and caregivers.
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.
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 LMS patients who were victims of morcellation.
By May 2016, LMSdr has raised and awarded over $1,000,000 for LMS 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 to help find a 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 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 by the collection of over 500 LMS tumor paraffin blocks and patient history, collected 2006 to 2015 by Sharon Anderson for Matt van de Rijn MD, PhD at Stanford University. This paraffin block drive is on-going. The paraffin block collection is available and has also been used by other researchers studying LMS.
In 2015, LMSdr sponsored a blood donation drive for Drs. Kristin Gangoo and Matt van de Rijn at Stanford University Medical Center. The blood has been collected for studying LMS circulating DNA in hopes to find a diagnostic tool and to measure the effectiveness of chemotherapy earlier than a CT scan could.
LMS PATIENT REGISTRY
LMSdr launched an independent LMS 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 LMS and help identify potential participants for clinical trials of the newest treatments available. LMSdr’s Scientic Advisory Comittee members wrote the LMS specific questionaire 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. The most recent scientific research advances for LMS are then reported in the LMSeAlerts newsletter and in the LMSdr Face Book Group.