NLMSF Summary

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 PROJ9ECT – 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.

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 workshops

THE NLMSF WORLD RENOWNED MEDICAL ADVISORY COUNCIL of 26 MEMBERS: 

  • This Council of researchers/clinicians represents some 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. http://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 Foundation to:  CURE MAGAZINE and GLOBAL GENES

THE  FACEBOOK  SUPPORT GROUP   / BLOG LINKS  to Dr. Breelyn Wilky, Sarcoma Research Oncologist at the Sylvester Cancer Center, Miami

  • 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 Careplanning information,  a plethora of patient resource assistance from financial assistance information,  personal care, meal planning, house cleaning 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

annieachee@aol.com                                machee@comcast.net

Reaching For the Cure Together

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ALERTS:
The Sarcoma Coalition is a nonprofit collaboration of 21 sarcoma advocacy organizations from around the country working toward a common purpose: To provide resources and support for those dealing with sarcoma – from patients and their families to allies in the research and medical communities.  Click Here to learn more.
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