USA: The National Leiomyosarcoma Foundation (NLMSF)

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Contact Information

The National Leimyosarcoma Foundation (NLMSF)
2843 E. Grand River,  Suite 230
East Lansing, MI  48823 - 6722
USA

Tel.: +1 303  783-0924
Fax: +1 303  783-4838
Email:   This email address is being protected from spambots. You need JavaScript enabled to view it.
Web: http://www.nlmsf.org/

 

Contact Person

Annie Achee (President)
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Organisation Profile

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 researcher, 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 that 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  summaries, as well as well being tips and information is provided. Sometimes the E Bulletins are prepared posting 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.
  • SIDE EQ - PATIENT SIDE EFFECTS INFORMATION PROGRAM - Collaboration and partnership with the GIST LIFERAFT 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 is available to patients starting in April of this year.
  • SURVIVORSHIP PROGRAM INFORMATION - From the American Society of Clinical Oncology (ASCO). Now Survivorship Care Planning information and guidance for a smooth transition from end of treatment to survival mode.
  • COLLABORATION IN PARTNERSHIP - The NLMSF is in partnership with several organizations that offer additional support of enhancing quality of life / well-being of patients and their families.

 

The NLMSF is working with Pattern.org to empower patients to direct excess cancer tissue through the Rare Cancer Research Foundation’s Pilot Cell Line Project. The Foundation has done its due diligence, canvassing for input by researchers who are interested in the Foundation’s pursuit of this initiative in order to broaden their research capabilities for LMS Patients. The NLMSF was selected as the entity to represent the Leiomyosarcoma Community.

THE NLMSF was instrumental in collaborating for federal legislation to bring  about Congressional approval for the  National Leiomyosarcoma Awareness Day, through the coordination efforts of NLMSF Legislative Liaison, Steve Baker, Mayor Pro Tem of Berkley, MI. Senator D. Stabenow, (D-MI) brought about the Congressional Resolution for the 2016 National Leiomyosarcoma Awareness Day. The Foundation is working once again for continuous annual recognition of this rare cancer/rare form of sarcoma as well as introduce a Resolution for a National Sarcoma Awareness Day or Week for hopeful Congressional support and 2017 approval.

 

Sarcoma is 1% of all cancers. There are approximately 50 - 100 sarcoma subtypes. Leiomyosarcoma is 13% - 17% of all sarcoma subtypes. There are approximately 5 Leiomyosarcoma subtypes, adding to the incredible complexity of this sarcoma subtype that creates the difficulty of its research to advance immunotherapy treatment and sustainability of treatment options.

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