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:
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.
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.
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.
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
For technical questions about the RCRF and Pattern.org:
Barbara Van Hare
Director of Foundation Partnerships
Rare Cancer Research Foundation
(816) 868-6352