INTRODUCING THE NLMSF – A SUMMARY OF MISSION AND FOCUS FOR LMS PATIENTS AND FAMILIES:
FOUNDATION MISSION AND FOCUS:
- Annual Patient-Family/Caregiver Education Symposia
- Patient Advocacy Resource Assistance Collaboration
- LMS Research Funding Support
- Organizational Collaborative Alliances for Advocacy of Programs
that benefit patients/families/research efforts
THE NLMSF SUPPORT PROGRAMS:
LMS LIVE CONNECT – Monthly Patient- to Patient-driven telephone conversation
- Building strength, courage, inspiration, and hope through personal conversations and sharing stories and experiences with one another
CONNECT WITH A CLINICIAN PROGRAM – Through the Foundation Facebook
- General support from 8 world renowned volunteer clinicians providing general answers to general questions posed by patients. This does not take the place of one’s own oncologist or care team
ANNUAL PATIENT – FAMILY – CAREGIVER LMS EDUCATION PROGRAMS
- Multiple programs throughout the year across the USA
- Collaborative programs with other sarcoma conferences in the US and Canada
THE NLMSF / LIFERAFT GROUP (GIST) SIDE-EQ SIDE EFFECTS PATIENT REGISTRY
- Offering patients information on treatment side effects to be aware of, as well as additional information on managing side effects through the SIDE EQ PATIENT REGISTRY.
THE NLMSF / RARE CANCER RESEARCH FOUNDATION PARTNERSHIP: Collaboration with the Rare Cancer Research Foundation (RCRF) – a partnership to represent the LMS Community for THE CANCER CELL LINE PROJECT – a program that promotes amplification of tumor tissue after surgery to accelerate research efforts. Researchers surveyed are in favor of this program, which is coordinated through the Broad Institute of MIT and Harvard.
Visit pattern.org for more information and guidelines for patients to follow to participate.
SARCOMA ALLIANCE FOR RESEARCH THROUGH COLLABORATION (SARC) MEMBERSHIP
Map of Clinical Trial updates throughout the USA for Patient/Family Access:
http://sarctrials.org/sarc-centers-map. Newsletter FB linked updates provided to the LMS Community.
Collaborative alliance with SARC to support new researchers interested in Sarcoma/LMS and SARC-SPORE studies.
SARCOMA PATIENT EURONET (SPAEN) ASSOCIATION Membership: The European Network of Sarcoma Patient Advocacy Groups – “A Better Future for Patients With a Rare Cancer.”
COLLABORATIVE ADVOCACY/SUPPORT ALLIANCES:
American Association of Clinical Research (AACR) – PROJECT GENIE – Collaborative Advocacy for this program
THE ONCOLOGY Research Information Exchange Network (ORIEN) – Collaborative Advocacy for this program
ONCOSCAPE – through the Fred Hutchinson Cancer Center, Seattle – Collaborative Advocacy for this program
CANCER CARE – Video education workshop partnership
THE NLMSF WORLD RENOWNED MEDICAL ADVISORY COUNCIL of 26 MEMBERS:
- This Council of researchers/clinicians representsome of the best in the world, 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. https://nlmsf.org/about/medical-advisory-committee/
- Achee, Chair of the Council, hosts an annual gathering of Sarcoma/LMS Researchers to come together for a
collaborative opportunity to share information, hopefully promote collaboration on LMS specific studies for the future.
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 submission by the Foundationto: CURE MAGAZINE and GLOBAL GENES
THE FACEBOOK SUPPORT GROUP / BLOG LINKS to Dr. Breelyn Wilky, Sarcoma Research Oncologist at the Sylvester Cancer Center, Miami, FL
- The NLMSF Facebook group, the Leiomyosarcoma.org Facebook group, Sarcoma Alliance For Research Through Collaboration Facebook, Dr. B. Wilky’s Blog (research oncologist at Univ. of Miami) have joined together for patients to have a greater support resource opportunity – to exchange/share information, stories and build courage, hope, strength.
- NLMSF.ORG WEBSITE offers continuous research updates, caregiver support
Information, Survivorship Care-planning information, a plethora of patient resource assistance from financial assistance information, personal care, meal planning, housecleaning sources, companies that specialize in cold caps / wigs . . .and much more . . .
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 Council, comprised of world renowned research
clinicians, LMS specific research projects are reviewed and recommended for funding, once such
projects are evaluated 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 researchers to continue their interest in LMS specific
Research study publications that lead to further development toward hopeful clinical trials.
CONTACT INFORMATION FOR THE FOUNDATION:
Annie Achee, President Dr. Mitchell D. Achee
303 783-0924 / 303 808-3437 Medical Advisory Council Chair