Annual Progress Report to Supporters
2015 ANNUAL REPORT, 2016 FORWARD FOCUS
The National Leiomyosarcoma Foundation (NLMSF) is strong and growing stronger. Our membership more than doubled during 2015. This report conveys the advocacy commitment to YOU as a patient and to research funding for Leiomyosarcoma.
The February 2015 National Rare Disease Week in Washington, D. C., was attended by four of our Board members to represent YOU and to elevate awareness of leiomyosarcoma as a rare disease among all cancers.
In August, the Foundation hosted its annual patient advocacy and research education series conference. Dr. Raphael Pollock, of the Pollock Laboratory at the James Cancer Center, Ohio State University, Columbus, Ohio; internationally renowned sarcoma researcher and oncology surgeon; and esteemed member of the Foundation’s Medical Advisory Committee, was the keynote speaker at the conference. Additionally, the Foundation sponsored a LMS Pelotonia bike rider in support of the Cancer Center’s Pelotonia Bike Ride, an annual fundraiser for sarcoma/cancer research which occurred during the conference. Conference highlights are posted here
In November, the Foundation conveyed important information regarding its position on behalf of patients and researchers to request a re-evaluation of a proposed regulatory change to the Common Rule guidelines pertaining to the handling of biospecimens relative to patient privacy. Patients and their families were informed of the need to advocate on behalf of research, and the summary of the information shared is on the Foundation’s website.
FUNDING LMS RESEARCH:
Late in 2014, Dr. Matt Van de Rijn, M.D., Ph.D., of the Van de Rijn Laboratory at the Stanford University Medical Center and internationally renowned research pathologist, was awarded a NLMSF research grant for his work on Circulating LMS Tumor DNA in blood.
An additional NLMSF Research Grant was awarded to Dr. Gonzalo Lopez, PhD., of the Solove Institute of the James Cancer Center at Ohio State University, for his work in evaluating how various cultured human LMS cancer cells are affected by a specific combination of chemotherapy agents.
As 2016 approaches, the Foundation plans to continue to advance its mission, vision, and goals to promote patient advocacy through annual patient research education programs, as well as focus on opportunities to engage in collaborative efforts with other sarcoma nonprofit organizations to amplify patient advocacy and promote coalition support for medical research advancement.
The 2016 NLMSF Connect Patient Education Symposium Series is April 2, 2016, at another world-renowned Cancer Center – The University Texas, MD Anderson Cancer Center in Houston, Texas. This one-day symposium is a new approach to the Foundation’s annual patient advocacy / research education program series. Save The Date information and registration for the 2016 Summit is available here. The program agenda reflects world-class experts in their respective fields, and provides patients with the opportunity to meet them and ask questions.
All patients, their families, caregivers, and friends are considered “stakeholders” in the Foundation’s focus for 2016. To be able to continue the Foundation’s work on behalf of LMS patient advocacy through research education, and to promote LMS research funding, your support and assistance is the critical key to success for the future advancement of treatment options for leiomyosarcoma.
Your active affiliation as a volunteer on a committee or as a Board member is always encouraged and welcomed. Your tax-deductible donation support strengthens the Foundation’s ability to fund research grants and be a force in the acceleration of LMS research.
Please browse our website to be inspired, find your voice and get involved to make a difference with the National Leiomyosarcoma Foundation!