The National Leiomyosarcoma Foundation, Empowering Patients, Encompassing Multiple Programs

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 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 transition from end of treatment to survival mode. Visit www.nlmsf.org – your LMS Patient Compass for support and vital information.
  • 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 Foun- dation 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.

Annie Achee
The National Leiomyosarcoma Foundation
http://www.nlmsf.org –
The Patient/Family/Care-partner Compass
Moving Forward Together –  Focusing on the Future –  in the Quest for a Cure!

.  .  .  .  .  .  .  .

Leiomyosarcoma – A Rare Disease With a Common Need
The NLMSF Patient/Family and Research Focus is a “Mission That Matters”

  • Patient/Family/Caregiver LMS Education Programs across the United States and abroad
  • Patient Resource Assistance and Advocacy
  • Foundation Website – THE PATIENT COMPASS
  • Leiomyosarcoma Research Funding

LMS Education Programs:  Provides current information on latest treatment strategies, clinical trial information, ongoing and future research efforts,  nutrition, physical and emotional wellbeing recommendations, as well as opportunity for connection opportunities with fellow patients as well as world renowned clinicians/experts in their medical field. Please visit www.nlmsf.org to access information about scheduled programs throughout the year.

Patient Advocacy – The Foundation represents the voices of patients and their families at annual oncology society conferences,  annual sarcoma conferences hosted by other cancer centers/institutes,  and patient advocacy summits / conferences. Additionally, the Foundation is in partnership with Cure Magazine, writing periodic articles that are posted online by CURE, and also sent to OncNursesNews.

The NLMSF coordinated efforts with the Senate starting in 2016 to successfully bring about Congressional approval for the first 2016 National Leiomyosarcoma Awareness Day.  The Foundation coordinates efforts annually to encourage ongoing Senate and Congressional support for subsequent yearly national awareness recoginition of this rare cancer/ sarcoma.

Contact Information:
Annie Achee, President, NLMSF  (303) 783-0924  or annieachee@aol.com
Together We Are Stronger –  Moving Forward . .  .
Focusing on the Future .  . ..Opening Doors .  . . .
Reaching for the Cure!

.  .  .  .  .  .  .  .

Foundation Mission and Focus:

  • Patient-Family/Caregiver Education And Support
  • Patient Advocacy Resource Program Collaboration
  • LMS Research Funding Support
  • Organizational Collaborative Partnerships – Bridging Patient
  • Resource Assistance

Connect With a Clinician Program – A Q & A opportunity for patients to post a general question to a world renowned clinician (one of 6 volunteers), and receive a general answer. This does not take the place of one’s own medical care team (disclaimer specification on the website). A highly successful support offered through the Foundation’s Facebook. The Facebook has three components: communication with Foundation followers;  the Q & A which can be public or private;  and the Blog.

The NLMSF / Rare Cancer Research Foundation Partnership
Collaboration with the Rare Cancer Research Foundation (RCRF) – a partnership to represent the LMS Community for the Pilot Cell Line Project – a program that promotes amplification of tumor tissue after surgery to amplify and accelerate research efforts. Researchers surveyed are in favor of this program, which has been connected to the NIH.

The NLMSF World Renowned Medical Advisory Committee
This committee of researchers/clinicians represent some of the best in the world. They are charged with vetting research project requests for funding by the Foundation. This is an important donation stewardship component of the Foundation, to ensure that all “investments in research” are used for the most promising LMS specific research projects.

NLMSF Weekly Bulletins
• Weekly information updates on research news, clinical trial listings, well-being articles, and more
• Communication of updates to the ACOR and Smart Patients Group, as well as community Patient Support Groups
• Article submissions by the Foundation to: Cure Magazine and Global Genes.

The NLMSF Website and Facebook Group –
All effective and helpful communication tools to convey the latest in information updates through the daily research efforts of volunteers.

Collaborative Partnerships With Other Sarcoma/Cancer Organizations

  • To enhance/expand patient resource assistance for patients and their families
  • Stronger together in mission and purpose on behalf of patients/families/caregivers

LMS Research Support
Through the Foundation’s Medical Advisory Committee, comprised of world renowned research clinicians, LMS specific research projects are reviewed and recommended for funding, once such projects are established as holding great promise for advancing treatment options in the future. Co-funding research projects are an ongoing goal of the Foundation. To date, several research projects have been co-funded, with more under current review. Additionally, the Foundation’s goal is to incentivize young resear-chers to continue their interest in LMS specific research endeavors, through monetary recognition of their published studies. GSJ