2023 Update

ACCELERATE LMS RESEARCH IN A BIG WAY –  Patient Powered!

RESEARCH SAVES LIVES!   THE Rare Cancer Research Foundation came together with the National Leiomyosarcoma Foundation in 2017 to bring an important research platform for patient engagement – it is a patient driven initiative that is important to advance research for accelerating treatment options.

Consenting to share tumor tissue ahead of a scheduled surgery is the way forward to impact LMS research in a big way.  De -identified tumor tissue will be sent to the Kock Institute of MIT – Dr. Jesse Boehm head of this research initiative, working with Barbara Van Hare, Director of Patient Research and Advocacy Liaison will work with each consenting patient and make the process seamless and easy.  All a patient has to do is decide to consent and sign the form given by Pattern.org. 

Read more about it here to understand the concept of such Patient -Driven Research  impact:

How “Pattern.org”  works and step by step guidance for patients to easily participate:

Donating Tumor Tissue starts the ball rolling and moves the needle forward.  Why should a patient

Consider doing this ahead of a surgery coming up?  Here is why:  https://pattern.org/whyDonate

https://docs.google.com/document/d/1QIOPHcqjoJ74i3_TP1Aw6obM9IfEdwMdaYDx_j6YPFU/edit?mode=html

For more questions about this program, contact Barbara Van Hare directly – she is happy to answer all your questions and allay all your possible concerns so that you feel comfortable with participating in this GIANT step forward for global LMS Research:   barbara@rcrf.org  or  anniechee@aol.com / 303  808-3437.  

 

2021 Update:

 

The COUNT ME IN PROJECT:
PATIENTS HAVE A VERY IMPORTANT ROLE TO PLAY IN HELPING TO ADVANCE LMS Research for hopeful AND ACCELERATION OF INCREASING TREATMENT OPTIONS https://bit.ly/3IAvNlL  Learn More and Get Involved As Soon as Possible.

The LMS-specific COUNT ME IN project has a webpage https://joincountmein.org/lms with more details about the project which is going to start enrolling patients in early 2022. There is a button on the webpage where patients can sign-up to be notified when they can enroll in the project.

2020 Update:

Video from Dr. Jesse Boehm of the Broad Institute addressing the 2020 International LMS Research Roundtable  
 
Dr. Jesse Boehm, Scientific Director of the Broad Institute of MIT/Harvard,  provides updates on  the LMS cell lines through patient-driven tissue donations – the cell lines are  sponsored by the NLMSF to be genomically screened  through CRISPR and tested against repurposed drugs – Dr. Boehm’s message to the International LMS Research Roundtable on October 3, 2020:  https://youtu.be/9u9zSlc8ES0.
 
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 is working together with the Roundtable – within Workgroup #1 – CELL LINES /PDX Models.
 
Video from Dr. Jesse Boehm of the Broad Institute addressing the 2020 International LMS Research Roundtable 
 


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.

New therapies for LMS can’t be discovered until we systematically map the best drug targets.  The Rare Cancer Dependency Map Initiative is creating patient models from living tissue and CRISPR/drug data to help researchers worldwide solve this challenge, together.   If you have an upcoming LMS surgery scheduled, you can help this initiative by donating excess tissue from your procedure.  Go to Pattern.org to learn more.
 
NLMSF is supporting the Rare Cancer Dependency Map Initiative at the Broad Institute which is described in the video below.  This is a critical project for LMS research and we need your help!  If you have an upcoming surgery for LMS, please consider donating tissue from your procedure.  It’s free and all the arrangements will be handled by our friends at Pattern.org.  Go to Pattern.org to learn more.  
 
Here’s the link to our Rare Cancer Dependency Map video, provided to the NLMSF.   We hope it will help engage patients and communicate about our project:
 
 

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
Psychiatry - Topic - Digital Journal
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.

www.rarecancer.org

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.

www.pattern.org

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

For technical questions about the RCRF and Pattern.org:

Barbara Van Hare

Director of Foundation Partnerships

Rare Cancer Research Foundation

barbara@rcrf.org

(816) 868-6352

 LMS Update Dashboard for the Cancer Cell Line Project-