Patient Education

NLMSF PATIENT – FAMILY LMS EDUCATION PROGRAMS

The NLMSF collaborates annually with major sarcoma centers of excellence to bring important and special educational opportunities to the LMS Community. Listed are program collaborations current and past, (some recorded).

2020:

Note: Due to the COVID-19 health crisis, all five LMS Education programs originally scheduled in 2020 were postponed. More information updates to be provided at a later date. However, there were special education programs provided
within the new NLMSF Patient – Caregiver Initiatives – NLMSF patient-caregiver Advocacy Roundtable and NLMSF Survivors Inspire Peer Network

EDUCATIONAL WORKSHOPS
of the National Leiomyosarcoma Foundation

MONDAY, JULY 13, 2020, 7 pm EDT –

Join the Patient-Caregiver Advocacy Roundtable Virtual Meeting
Guest Speakers: The Rare Cancer Research Foundation
and the Broad Institute of MIT/Harvard.

Topic of discussion:
CANCER CELL LINE PROJECT – Patients’ consenting to tumor donation helps global research. Learn more about the collaboration of the NLMSF and the Broad Institute’s Cancer Cell Line Project and Dependency Map – tumor screening: ((https://leiomyosarcoma.info/cancer-cell-line-project/)

Rare Cancer Research Foundation | Rare Cancer Research Foundation (powered by DonorBox)

THURSDAY, JULY 16, 7 pm EDT –

Join the Survivors Inspire Peer Network Virtual Meeting
Guest speaker – Founder and Director of REACH for SURVIVORSHIP PROGRAM

Topics of discussion:
SURVIVORSHIP CARE PLANNING after treatment
NUTRITION during and after treatment

Both impact maintenance of good health, quality of life. Nutrition is important in maintaining good health, quality of life to enhance strength and resilience in Survivorship.

Contact annieachee@aol.com or call 303 808-3437 to join the virtual meetings.

July 16, 2020:

For the NLMSF SURVIVORS INSPIRE PEER NETWORK – Special presentation by the Director of Vanderbilt Ingram Cancer Center’s REACH for Survivorship Program. Research in long term outcomes for cancer survivors as well as the design of novel therapeutic protocols to decrease adverse long-term effects of therapy are part of the focus areas of REACH. Studies in the physiologic and psychosocial outcomes among models of care are ongoing.

June 8, 2020:

For the NLMSF Patient -Caregiver Advocacy Roundtable – A special presentation by the NCI was held on Monday, June 8, 2020 – to offer a patient advocacy webinar on their new initiative and what it can mean for LMS patient participation – the importance and impact on the future research for LMS. Awareness of this information is important to us all as stakeholders of our survivorship and the future of LMS Research. The National Cancer Institute (NCI), in collaboration with the NLMSF Patient-Caregiver Advocacy Roundtable, offered the MyPART Network Presentation. A summary of the telecon discussion is available upon request: annieachee@aol.com For more information describing MyPart Network visit:

MyPART Network – Leiomyoarcoma.info

(NLMSF) The National Leiomyosarcoma Foundation joined The NCI MyPART Network provide an opportunity for patients to share natural history information from their cancer journey for de-identified research data to be generated by the NCI. The MyPART Network is coordinated through the NCI Center for Cancer Research (CCR). The de-identified data is accessible to researchers to help in better precision design research projects and clinical trials. It is the hope of the NLMSF that once enough LMS patients contribute to this NCI initiative, NCI researchers will want to open new research opportunities to further study LMS, and also have a connection to the NLMSF-SPAEN LMS International Research Roundtable membership and workgroup initiatives.

May 4, 2020:

For the Patient – Caregiver Advocacy Roundtable Meeting
Dr. Anette Duensing, MD, from the Hillman Cancer Center, Pittsburgh, PA, presented information on the importance of Pathology and second opinion opportunities for pathology diagnosis for patients. She also discussed current translational research updates going on in her lab. Dr. Duensing is a member of the NLMSF-SPAEN International LMS Research Roundtable and contributing to one of the workgroups within the Roundtable.

April 21, 2020:

Eggs, Springtime Celebrations, and Food Poisoning

The Federal Drug Administration (FDA) met with the NLMSF to discuss several questions posed by the NLMS Patient-Caregiver Advocacy Network Roundtable – and offered an extensive Q & A session for participants. 10 representatives from the FDA were on hand for this teleconference. A summary of the meeting is available upon request:annieachee@aol.com

Sarcoma Webinar Series

Learn the latest scientific advances in sarcoma research

Join Dr. Paul Huang of the Royal Marsden Hospital for Weekly Sarcoma Webinars. The series, organized by Priya Chudasama of the German Cancer Research Center, will be every Wednesday beginning at 11:00 am EDT (unless otherwise specified). These webinars are free and open to the community. LMS and other sarcoma subtypes will be discussed as we connect the clinical and research communities regarding the latest scientific advances. Learn more, including scheduled speakers, and register at https://sarcoma-webinar-series.jimdosite.com/

2019

JAMES CANCER CENTER/SOLOVE CANCER INSTITUTE – “TACKLING LMS, A TEAM SPORT”
SEPTEMBER 21, 2019 / 5K Walk event September 22RECORDED Patient-Family Program: URL: https://mediasite.osu.edu/Mediasite/Play/3fa832c1d31046aa96b201c93b782f661dFRED HUTCHINSON CANCER CENTER/SEATTLE CANCER CARE – “FACING SARCOMA / LMS TOGETHER”
APRIL 27, 2019 MD ANDERSON CANCER CENTER – “FACING LMS TOGETHER”
APRIL 13, 2019 SARCOMA ONCOLOGY CENTER – “FACING LMS TOGETHER”
MARCH 11, 2019 DANA FARBER CANCER CENTER – 2019 SARCOMA CONFERENCE Webcast: https://www.dana-farber.org/uploadedFiles/Pages/For_Patients_and_Families/Care_and_Treatment/Treatment_Centers/Sarcoma/sarcoma-and-gist-symposium.pdf (Embedded in the agenda in 3 parts)

2018

HILLMAN COMPREHENSIVE CANCER CENTER – “Facing LMS Together”
April 21, 2018TORONTO INTERNATIONAL SARCOMA SYMPOSIUM
June 7 – 8, 2018Link to the program:www.torontosarcomasymposium.comMAYO CLINIC – “Facing LMS Together”
July 14, 2018
Link to the Program: https://ce.mayo.edu/lmspatiented2018STANFORD HEALTH CARE – “FACING LMS TOGETHER”
August 4, 2018DANA FARBER CANCER INSTITUTE – Annual Sarcoma Conference
September 29, 2018
Link to the Conference Presentations:farber.org/uploadedFiles/Pages/For_Patients_and_Families/Care_and_Treatment/Treatment_Centers/Sarcoma/sarcoma-and-gist-symposium.pdfMOFFITT CANCER CENTER – “FACING LMS TOGETHER”
November 3, 2018
Recorded videos can be found under the “patient education” and “sarcoma” categories.

Click on the link: https://moffitt.rev.vbrick.com/#/media/browse from any device that accesses the internet (PC, iPhone, iPad, Samsung Galaxy, etc.)
Sign in using your Moffitt username and password (username example: John Smith = SmithJ)
The screen will advance to a category of videos. Find the category you are looking for and click it.
Scroll to find the video you are looking for, then click it.
Press play on the video

*This link is available on and off Moffitt Campuses.Sarcoma Patient Forum 2018 Part 1 Sarcoma Patient Forum 2018 Part 2 Sarcoma Patient Forum 2018 Part 3

2017

UCLA/RONALD REAGAN MEDICAL CENTER – February 18, 2017Link to the Program:http://www.targetedonc.com/conference/CTOS-2015/an-early-stage-trial-of-immunotherapy-for-advanced-sarcomas#sthash.nqGEDIO3.dpufFRED HUTCHINSON CANCER CENTER / SEATTLE CANCER CARE –
April 9, 2017DANA FARBER CANCER CENTER – October 24, 2017
Link to the Conference:http://www.dana-farber.org/sarcoma-and-bone-cancer-treatment-center/gist-soft-tissue-sarcoma-symposium/KNIGHT CANCER INSTITUTE – October 21,2017

2014-2016

MD ANDERSON CANCER CENTER – Houston, TX
Recorded podcast segments of the program found throughout the website by subject. UNIVERSITY OF MICHIGAN CANCER CENTER JAMES CANCER CENTER, Ohio State University