LMSdr was created in 2006 to bridge the gap between patients and researchers.
- Funds LMS specific research
- Promotes worthy clinical trials
- Advocates for more LMS research
- Collaborates with others to support our mission
- Provides information, education and support for patients
- And is a voice for the LMS community
We are working for the cure!
Olaratumab + Doxorubicin Extends Survival
The addition of adding olaratumab to doxorubicin extends survival one year in patients with advanced soft tissue sarcomas according to results for a phase II trial. This monoclonal antibody is being now tested in a phase III study and has received an FDA Breakthrough Therapy Designation. According to Dr. William Tap, the chief of the sarcoma program at Memorial Sloan Kettering, “It’s a very nontoxic drug.” Researchers are excited to potentially add olaratumab with other chemo agents. See Phase 3 trial
LMS Blood Drive Update
The LMS blood drive has been a success with over 167 samples collected for the circulating DNA research project. This project by Drs. Kristen Ganjoo and Matt van de Rijn at Stanford, hopes to identify when a treatment is working or not, by looking for tumor DNA in the blood. This could potentially help patients long before they get their next CT scan. A second goal is to be able to tell if a uterine fibroid is a leiomyosarcoma tumor with a blood test. Thank you LMS blood donors!
Biomarker for Trebectidin Response
Drs. Suzanne George (Dana Farber) and Matt van de Rijn (Stanford) are trying to identify a biomarker which will predict who will respond to Trabectidin (yondellis.)
Anlotinib for LMS?
News from ASCO! Phase 2 study from China shows promising efficacy for LMS. The study included a range of soft tissue sarcoma subtypes. 15.66% (26 patients) had LMS. Of those LMS patients, 69.2% were progression free at 12 weeks. The median progression free survival was 11.7 months for LMS.
ADVOCATE for HR5404 Medical Device Safety Bill
Call your Representatives now before this bill dies and tell them to pass HR5404! This bill strengthens federal requirements for hospitals and device manufacturers to report adverse outcomes caused by medical devices like the power morcellator. In the case of the morcellator, the FDA said they received no reports of it spreading uterine LMS until Drs. Noorchasm and Reed reported it in Dec. 2013. Such a bill could potentially save lives.
Make a donation for LMS research and receive the 2016 LMSdr Conference VIDEO of the speakers as our thank you gift. (Suggested donation $50 or more.) Anyone who attended the conference will get a PROMO code and can view them for free – email Sharon for the code.
RARE Foundation Alliance
LMSdr is now a member of the RARE Foundation Alliance and attending the RARE Patient Advocacy Summit September 22-23, 2016.
Zumbathon fundraiser at the Jewish Community Center, Bridgewater New Jersey was a success on June 5th – Thank you Susan Grossman!
High School Fundraiser
Student Billy Woltz and his band raised $4,453.00 with a benefit concert in honor of their Logan High School teacher Kelley Schaefer Hoellrich in Ohio. Congrats to an awesome group of teens!
LMSdr has been a supporter of the Congress’s 21st Century Cures Initiative and its companion legislation in the Senate. The OPEN ACT, a bipartisan legislation that could double the number of treatments available to rare disease patients, has been left off the list. We are urging advocates to contact their representatives in the House and the Senate to ask that they step-up for rare disease patients and co-sponsor the OPEN ACT.
We are thrilled to announce that Ofir Gabay has joined our board as Treasurer. Ofir is an accounting professional who owns his own business. He lost his mother to LMS in 2015 and wants to help us work to find treatments that will work. Welcome Ofir!
Shop & Donate
Thank you for shopping at Smile.Amazon and designating a percentage of the profit to LMSdr. You raised $430 within the last six months! You can register at Smile.Amazon.com
July 10th: ZUMBATHON 9am-11am, 3911 Amboy Rd., Staten Island, NY. Contact email@example.com
July 15th: LMS Awareness Day during Sarcoma Awareness month! Order ribbons to give out from Heidi.
September 22–23: Rare Disease Advocate Summit, Huntington Beach, California
November 9-12: CTOS Annual Scientific Meeting for sarcoma specialists and advocates