2023 Update

The NLMSF Patient-Caregiver Advocacy Network met on July 13 for a presentation on the CANCER CELL LINE PROJECT FOR LEIOMYOSARCOMA – a Patient-Driven Project for Global Research. Dr. Jesse Boehm from the Broad Institute of MIT/Harvard made a presentation which can be accessed here.
The Rare Cancer Research Foundation (RCRF) is dedicated to curing rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate the deployment of promising therapies.
Pattern.org, part of the Rare Cancer Research Foundation, is a patient-research matching program that enables patients to directly donate their tumor tissue and medical data to research.

 

https://youtu.be/M_ap5kc42iM

 

Here is a link to a Dependency Map overview that illustrates the overall work of the Broad Institute –  DepMap collaboration for LMS and  – https://www.broadinstitute.org/illuminating-human-biology/cancer-dependency-map

2020 Update: 

Progress from the initial Cancer Cell Line Project 2017 launch, with the NLMSF in collaboration with the Rare Cancer Research Foundation (RCRF) to accept LMS into the pilot project at that time.  Since then, this is the progress and trajectory to date, as presented to the International LMS Research Roundtable.  As planned,  the Broad Institute of MIT/Harvard are working together with the Roundtable – within Workgroup #1 – CELL LINES /PDX Models.  

The key to continuing progress is for patients to consent to donating tumor tissue to the Rare Cancer Research Foundation (Barbara VanHare):   Pattern.org  –  prior to surgery (at least 2 weeks) for tumor tissue to be given to the Broad, to grow cell lines that can be cultivated and screened toward further Crispr Cas9  screening and repurposed drug screening, as well, now, to develope tumor that can be be used for precision research and ultimately clinical trials.  It is a complex system, but with patients standing behind research through tumor donation consent –  researchers can move forward faster and more efficiently with better knowledge through generated data from the tumor tissues.  Ultimately,  better understanding of the LMS tumor can lead to overcoming impediments to treatment options – expansion of treatments for the future is the goal for enhancing survivorship. Learn More here: https://youtu.be/M_ap5kc42i .   

LMS Dependency Map: shorturl.at/dtzLQ

Jesse Boehm, Scientific Director, Cancer Dependency Map

Moony Tseng, Group Leader, Cell Line Factory

RCRF Cancer Cell Line project partnership with the NLMSF established to include leiomyosarcoma on APRIL 9, 2017:

The NLMSF encourages participation in this patient-driven project.

This offers a huge opportunity to move the needle forward for potential research initiatives across the globe.  Researchers can access de-identified data for research initiatives/studies they wish to pursue. If you have questions about this program please contact  Annie Achee at  303  783-0924  or 303  808-3437

Announcement in CURE MAGAZINE; The National Leiomyosarcoma Foundation Is Joining A Tumor Sample Project To Advocate For LMS Patients

If a patient is facing a biopsy or surgery to extract an LMS diagnosed tumor –  tissue from the procedure(s) can be offered to the Rare Cancer Research Foundation (RCRF) through a simple consent form.  The RCRF takes care of the rest of the coordination to make sure your de-identified tumor sample is sent to the Broad Institute of MIT / Harvard laboratories for cell processing and hopeful growth.