LOOKING BACK on 2018 – LOOKING FORWARD TO 2019:
The New Year has come, and we would like to take a moment to thank you for your continued support of the National Leiomyosarcoma Foundation… We would like to share with you our reflections of the past year’s successes, through your belief and trust in our mission and purpose on behalf of patients, families/caregiver community, and the research community as well. The 2019 focus for the future is also part of this overall summary from the Foundation
WORKING FOR YOU IN 2 0 1 8
THE NATIONAL LEIOMYOSARCOMA – SARCOMA PATIENT EUROPEAN NETWORK LMS RESEARCH ROUNDTABLE –
A global initiative to accelerate and advance investigational LMS / ULMS investigational research, for collaborative research initiatives that can hold promise for bringing more clinical trials to the research landscape. Additionally, and as important, is the determination of the research membership to establish a treatment and care protocol for LMS / ULMS patients that will be applied more consistently, using the NCCN guideline, but further clarifying a personalized medicine approach for LMS patients. Both will be combined to better serve the LMS Community, also providing community providers outside of large sarcoma centers with helpful guidance.
The LMS COMMUNITY – MESSAGE BOARD –
In connection with the LMS Research Roundtable, the Message Board will provide an opportunity for patients to have their insights and perspectives known to the Research Roundtable membership to take be taken into consideration in the development of consistent protocol for care and treatment in the future. The patient/family/caregiver perspective is key to the necessary examination of the importance of making changes to improve care.
THE CANCER CELL LINE PROJECT – Partnership with the Rare Cancer Research Foundation / Broad Institute of MIT/HARVARD
The Foundation represented the LMS Community as the Cancer Cell Line Project which began in 2017, as a patient-directed tumor tissue donation contribution effort to further advance the potential for new research initiatives on a global scale beginning in 2017. The NLMSF promoted leiomyosarcoma as the last of 10 cancers to be accepted into this program at that time. The NLMSF recently accepted an invitation by the Broad Institute to visit the researchers behind the Cancer Cell Line Project and tour the labs that process the donated tumor tissue and see how cancer cell lines are cultivated to generate useful research data through the www.pattern.org protocol. Today, leiomyosarcoma patients have donated tumor tissue in advance of their surgeries, and the LMS sarcoma subtype is one of three out of 10 cancers represented, that has advanced cancer cell line development to the stages of CRISPR genomic analysis and drug repurposing screening. This is such an important milestone of success for the Leiomyosarcoma Community. For more on the Cancer Cell Line Project: https://nlmsf.org/cancer-cell-line-project-2/.
The National Leiomyosarcoma Foundation has made great strides in continuing its focus and mission to offer patient-centric – family/caregiver-centric support –
The Foundation established the third NLMSF Support Website Resource:
LIFE CHANGE – “A New Normal” – for survivors completing their treatment and moving forward with
their lives to rebuild quality of life. This new website is a “soft landing,” not only for
patients but caregivers as well: https://nlmsflifechange.wordpress.com/
VOICES to be Heard – on this website under the HOPE ON THE HORIZON BLOG. Here patients and caregivers can share what works for them in moving forward with revitalizing quality of life . . . positive words of wisdom are always welcomed to build courage, hope, resilience, strength.
THE LMS COMMUNITY SUPPORT HELPLINE – in Collaboration with the Cancer Support Community – The NLMSF established this free, dedicated Help Line for LMS patients and their families to have a one-stop service of support for general questions pertaining to guidance on health insurance, financial assistance resource identification, lodging and transportation resource assistance by location, emotional well-being support for patients (at least 6+ sessions with a counselor and then subsequent referral if needed); and much more. The purpose of the Helpline service: to have trained social workers to become well-acquainted with the LMS Community and the unique needs of patients and family members/caregivers, to be able to provide a personalized service approach to the LMS community.
NLMSF FUNDING SUPPORT FOR RESEARCH PROJECTS – Through “investing” in LMS Research, patients, families, friends came together to support /contribute to the Foundation ’s funding of important LMS research projects. All donations are investment “gifts” directed to LMS research – lighting the way to discovery that can turn into clinical care treatment options . . . “gifts” that keep on giving!
YOUR DOLLARS IN ACTION:
- The Foundation supports the new research initiative for the P53 – the study of potentially targetable mutations – p53, with 10 additional elements that can be applied to LMS. The role of macrophages in tumor microenvironment for LMS – Anti-PD1 investigational research, comparing macrophages in LMS vs breast and color cancer is beginning. Development of new antibody vs macrophage in combination with anti-PD-1 antibody is being investigated (Pembrolizamab and Optivo); validation of LMS cell lines and PDX models and SARC trial patients to search for targeted tumor signatures; identification of such tumor search signatures will benefit P13/mTOR, p53, LGF1R, ER therapies.
- The Specialized Program of Research Excellence (SPORE), a Sarcoma Alliance Through Research and Collaboration research project for new biologically-rational clinical trials in sarcoma, that hold promise for cross over progress in a variety of sarcoma subtypes, including evaluating patient response through a multidisciplinary approach to the evaluation of patient response to current treatment therapies continues to facilitate exploration of new/ more effective treatment options, and promotes the acceleration of treatment advancements for the full spectrum of the sarcoma population.
- Development of a non-invasive diagnostic assay for the highly accurate pre-operative distinction between uterine leiomyomas and leiomyosarcomas. The detection of circulating
tumor DNA reported in several cancers, but only a few in sarcomas and no large-scale study to detect ctDNA for LMS patients –inspired further study for sarcomas and brought a proof of principle study to include LMS patients to determine the feasibility of ctDNA analysis. Such an analysis would enable clinicians to identify patients who could safely undergo laparoscopic procedures using power morcellators. A “liquid biopsy” test based on the analysis of tumor-associated genetic aberrations in circulating tumor DNA (ctDNA) in plasma maybe of great use such situations.
WHAT AN AMAZING IMPACT YOUR “INVESTMENT”
DONATIONS ARE MAKING!
SARCOMA CONSORTIUM COLLABORATION – MEMBERSHIP IN THE NEW SARCOMA COALITION:
The Foundation’s collaboration and commitment to enhancing/improving patient care through patient/family/caregiver resources/support/assistance continues. As a member of the Sarcoma Coalition, there is patient/caregiver representation on the Steering Committee of the Sarcoma Coalition, as well as participation in the following Work Groups within the Coalition: Advocacy, Cooperative Research Funding, and Education. The mission and purpose of the Coalition is to:
– impact patient care through building more national awareness of sarcoma;
– building an educational infrastructure for the medical community to be able to better diagnose sarcoma/improve treatment/care delivery;
– to come together for strengthening funding resources for research projects that have the potential to advancing treatment options for patients.
PATIENT / FAMILY – CAREGIVER LMS EDUCATION PROGRAMS THROUGHOUT THE US AND CANADA:
- INTERNATIONAL SARCOMA SYMPOSIUM – NLMSF partnership – Toronto, CA
- MAYO CLINIC – NLMSF Symposium partnership – Rochester, MN
- MOFFITT CANCER CENTER – NLMSF Symposium partnership – Tampa, FL
- HILLMAN CANCER CENTER – NLMSF Symposium partnership – Pittsburgh, PA
- KNIGHT CANCER CENTER – NLMSF participation – Portland, OR
- SARCOMA EXCHANGE WITH SARCOMA ALLIANCE – NLMSF participation, Atlanta, GA
LOOKING FORWARD in 2019 –
W O R K I N G F O R Y O U in the new year . . .
The NLMSF – SPAEN L M S RESEARCH ROUNDTABLE CONVENES to discuss and strategize on the following topics:
- What was learned from previous clinical trials – evaluate the successes and less than desired results;
- What is to be learned from the failed clinical trials in terms of address to address new questions and questions yet unanswered;
- Strategize new collaborative investigational research projects that can address answer the unanswered questions to date;
- Develop guidelines for a consistent/precise approach to diagnosis, care, and treatment of Leiomyosarcoma patients, going beyond the NCCN guidelines that are currently applied: https://nlmsf.org/nccn-guidelines-patients/
TAKING INNOVATIVE LMS-SPECIFIC RESEARCH TO A WHOLE NEW LEVEL
THE NEW LMS COMMUNITY FORUM – MESSAGE BOARD
Posting messages for the Research Roundtable membership – to share perspectives on care and treatment as well as research is important to stay connected to the Research Roundtable. Patients voices to be heard!
CONTINUATION OF FUNDING LMS RESEARCH PROJECTS
Annual funding support for vetted LMS research projects continues. On average, three per year have been funded. Now, with the International LMS Research Roundtable, the research initiatives to be developed through collaborative efforts within the Roundtable membership will be key to continued LMS-specific research accelerated progress. To date, the NLMSF has funded over One Million Dollars directly in support of research projects.
CONTINUED COLLABORATION /PARTNERSHIP WITH THE BROAD
INSTITUTE TO FURTHER INCREASE LMS TUMOR TISSUE DONATIONS
THROUGH PATIENT CONSENT PRIOR TO SURGERY.
It is important to support the progress being made with cancer cell line
development to propel research initiatives on a global scale. The NLMSF
will be funding the next steps in progress for the three cancer cell lines
that will be moving forward to advance treatment options through the
Broad Institute of MIT/Harvard.
NEW PROGRAMS COMING . . .
- CAREGIVER ACTION NETWORK (C A N) – Collaboration with the NLMSF to bring Lunch and Learn sessions, offering special attention and support to Caregivers.
- A TIME TO HEAL FOUNDATION – Collaboration with the NLMSF to expand survivor and caregiver resource support/information.
Details for both programs to follow in 2019. Stay tuned!
EXISTING NLMSF SIGNATURE PROGRAMS CONTINUING . . .
L M S EDUCATION SYMPOSIA / SARCOMA CONFERENCE REPRESENTATION:
Education program schedule for the year encompasses five regional sites, and more information on each program will be provided on the Patient Education webpage of www.nlmsf.org Foundation website.
QUALITY OF LIFE SUPPORT PROGRAMS CONTINUE:
“SIDE EQ” PATIENT PORTAL TO POST SIDE EFFECT SYMPTOMS AND LEARN ABOUT SYMPTOM MANAGEMENT through patient experience and clinician guidance: https://nlmsf.org/side-eq/.
CONNECT WITH A CLINICIAN PROGRAM- offering patients the opportunity to connect with a volunteer Sarcoma Research Clinician to ask general questions about treatment therapies, symptoms, clarification on research efforts, and more. Email firstname.lastname@example.org to forward questions (confidential, de-identified patient inquiries) to be coordinated with researchers for responses.
THE LMS COMMUNITY LIVE/FREE HELPLINE – trained personnel to assist patients and families, finding local resources as needed; psychosocial sessions provided, and more: 888 264-4760 Monday – Friday 9 am – 9 pm EST.
WEEKLY NAVIGATOR NEWS: Bringing new information on research updates, perspectives of researchers on new information about drug therapies and research efforts; well-being articles; webinar, podcast alerts, clinical trial alerts, suggested books, inspirational messages; interviews with researchers at annual meetings; recorded LMS specific presentations at meetings.
LMS LIVE CONNECT – Patient/Caregiver- driven monthly teleconferencing (every third Thursday of the month) to build courage, hope, resilience, strength
– hearing a voice on the phone, going beyond the NLMSF Facebook Group.
Contact email@example.com to participate in the monthly teleconference which will be listed in Navigator News reminders;
NLMSF Facebook: Facebook.com/NationalLMSFoundation;
Blogs: to be sent to firstname.lastname@example.org
THREE NLMSF INFORMATION WEBSITES – updating all resource information offered FOR VALUE-ADDED SUPPORT and ASSISTANCE:
www.nlmsf.org – patient/family/caregiver guidance and resource information from initial diagnosis to end of treatment.
– research article updates; clinical trial update information links; interviews with world-renowned researchers; patient-driven research platforms that contribute to research initiatives to be aware of for elective participation;
https://nlmsflifechange.wordpress.com/ – LIFE CHANGE – |A New Normal” – information resources for rebuilding quality of life after treatment is completed, not only for patients but for caregivers as well. “A soft landing” in moving forward in survivorship care planning for the future. Hope on the Horizon Patient-Caregiver BLOG to encourage, share important tips, build hope for others.
T H E N L M S F IS MOST GRATEFUL . . . .
T H A N K Y O U A L L FOR SUPPORTING THE NATIONAL LEIOMYOSARCOMA FOUNDATION – FROM PATIENT/FAMILY VOLUNTEERISM TO FUNDRAISING FOR LMS RESEARCH.
G R A T E F U L to A L L D O N O R S – investing in the future of research for future treatment advancements – Dollars received are “gifts” that keep on giving, assuring the continued progress and potential for research breakthroughs that have made and will continue to make all the difference in survivorship.
EACH AND EVERY PERSON IMPACTS THE MISSION AND FOCUS OF SUPPORTING THE LMS COMMUNITY IN THE DIAGNOSIS, TREATMENT, and MANAGEMENT OF LEIOMYOSARCOMA.
WE ARE ALL HERE FOR EACH OTHER – to WORK TOGETHER – to COLLABORATE WHEREVER and WHENEVER POSSIBLE – to MAKE THE ALL IMPORTANT DIFFERENCE IN:
“MOVING FORWARD IN THE QUEST FOR THE CURE -TOGETHER!”