������������������������������������������������������ ���������������������������������������������������������������� �������������������������������������������������������������������� The National Leiomyosarcoma Foundation was incorporated in 2001. The original patient/caregiver gatherings of support began in 1997 as a “HugFest” annual event. Today, the NLMSF is a robust patient/family/advocacy support organization that focuses on empowering patients diagnosed with Leiomyosarcoma within the cancer/sarcoma ecosystem. The empowerment support offered by the Foundation encompasses multiple annual patient education programs throughout the United States and in 2018, Canada and the UK. The Foundation collaborates with researchers and cancer research/treatment centers to ensure that LMS education opportunities are available to patients, their families and caregivers. Knowledge is power = Patient Power....to know more is to be able to ask the right questions and enhance one’s oncology appointment and strengthen the care team experience. Funding the much needed LMS research is another important component of the mission and purpose of the NLMSF. Standing behind the researchers who give hope to extend survivorship through the much needed breakthrough research efforts - to accelerate advancement in treatment options is imperative. The average survival time is 5 years from diagnosis. The National Leiomyosarcoma Foundation represents the LMS Community through its support programs as follows: • LMS Live Connect With Fellow Patients/Caregivers - monthly conference call in, building support, strength, courage, hope, and inspiration in sharing stories, treatment information and experiences. • Connect With a Clinician Program - through the Foundation’s Facebook, patients have access to world renowned clinicians who provide general answers to the general questions posted by patients. This program does not take the place of a patient’s own oncologist or care team (disclaimer specifies this). • Annual Patient-Family/Caregiver LMS Education Program - throughout the year, across the US, several educational symposia are offered, to learn more about research updates, clinical trial updates, psychosocial as well as integrative medicine/nutrition guidance information is provided. The opportunity to connect with fellow patients, and experts in their field of medicine/oncology is the additional importance of such programs. • NLMSF E-Bulletins are posted weekly for information updates on research, clinical trials, general medical �� The GIST and Sarcoma Journal summaries, as well as well being tips and information. Sometimes the E Bulletins are posted twice a week. • The NLMSF Website: www.nlmsf.org is the Patient Compass for a new diagnosis, navigating treatment, after treatment/survivorship. Guidance on what to ask, who to ask, when to ask for each step of the journey, plus a myriad of patient help resource information from financial assistance, to lodging for out of area appointments, meal preparation assistance, housecleaning assistance and more. Updates on research/medical information and clinical trials are continuously posted on the website. The Medical Advisory Committee of world renowned researchers are supportive of the Foundation through their work in review of LMS specific research proposals received. • SideEQ - Patient Side Effects Information Program - Collaboration and partnership with the The Life Raft Group, will facilitate the ability for patients to access information about possible side effects of drug therapy protocols and better prepare themselves for potential side effects as a result. This program became available to patients in April of this year. • Survivorship Program Information - The American Society of Clinical Oncology (ASCO) Survivorship Care Plan provides information and guidance for a smooth
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