Bringing Awareness and Resources for Patients with Leiomyosarcoma

With a focus on patient/family education, The National Leiomyosarcoma Foundation provides a mission and purpose for patients and families faced with the diagnosis of Leiomyosarcoma (LMS).

Through cancer research center collaboration and partnerships, the Foundation conducts one-day patient symposia throughout the year, available both within the United States as well as overseas. The presentations focus on providing up-to-date information on treatment advancements through new drug therapies, immunotherapies, clinical trial information and nutrition. There is also an attention to psychosocial issues for people coping with this rare disease and the journey through it.

In order to offer patients and their families/caregivers as many resources as possible, the Foundation holds a high interest in collaborating with other cancer organizations. Patients at many sarcoma and clinical research conferences are represented by the Foundation, in order to bring in all the most recent information.

The National Leiomyosarcoma Foundation believes that a knowledgeable patient is a powerful patient, a patient that is able to ask the right questions during oncology appointments and be a strong self-advocate.

With the current median survival time of LMS from diagnosis being five years, the Foundation also supports research projects which offer potential for expansion of treatment options, leading to an extended survivorship. In August, the Foundation supported a $1 million LMS research grant which involves several US and European researchers. These researchers are working together to advance research and treatment of Leiomyosarcoma.

Working closely with Senator Debbie Stabenow (D-Mich.), the Foundation was part of the process to gain Congressional approval of the awareness day resolution. The results of these efforts were the approval of National Leiomyosarcoma Awareness Day, on July 15, 2016.