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!
$1 MILLION INTERNATIONAL COLLABORATIVE PROJECT TO START
8/8/16 The Liddy Shriver Initiative visualized and coordinated a comprehensive LMS study by Drs. Fletcher, van de Rijn, Chibon, Bauer and Langenau. This study is funded by the Liddy Shriver Initiative ($250,000), LMSarcoma Direct Research Foundation ($125,000,) National LMS Foundation ($125,000) and from the researchers’ own resources ($500,000.) They plan to sequence the whole genome of 200 LMS tumors, investigate the PI3K-AKT-mTOR pathway and test new therapies with cell lines, mice and zebra fish. The ultimate goal is to test these in clinical trials. Details of the study
Looking for new options? Have your doctor order this free test to see if you have this gene rearrangement which might respond to the new drug Entrectinib by Ignyta.
Olaratumab + Doxorubicin Extends Survival
The addition of olaratumab to doxorubicin extends the life span of patients with advanced soft tissue sarcomas for up to one year, according to results of a phase II trial. This monoclonal antibody is being now tested in a phase III study and has received an FDA Breakthrough Therapy Designation. The chief of the sarcoma program at Memorial Sloan Kettering, Dr. William Tap states, “It’s a very nontoxic drug.” Researchers are excited to potentially add olaratumab with other chemotherapy agents. See Phase 3 trial.
LMS Blood Drive Update
The LMS blood drive has been a success; over 167 samples have been collected for the circulating DNA research project. The project is spearheaded by Dr. Kristen Ganjoo and Dr. Matt van de Rijn of Stanford University, whose objective is to identify whether a treatment is working or not by looking for tumor DNA in the patient’s blood. This could potentially help patients long before they get their next CT scan. The second goal of the project is to determine if a uterine fibroid is a leiomyosarcoma tumor. Thank you, to all LMS blood donors!
Biomarker Trabectedin Response
Dr. Suzanne George (Dana Farber) and Dr. Matt van de Rijn (Stanford) are trying to identify a biomarker which will predict who will respond to Trabectedin (yondellis.)
Make a donation to LMSdr and receive the 2016 LMS Conference VIDEO as our thank you gift. (Suggested donation $50 or more.)
ADVOCATE for HR5404
Contact your Representatives and urge them to support HR5404 Medical Device Safety Bill. Without support, this bill will die in the House of Representatives. This bill strengthens federal requirements for hospitals and device manufacturers to report adverse outcomes caused by medical devices like the power morcellator.
RARE Foundation Alliance
LMSdr is now a member of the RARE Foundation Alliance and will be attending the RARE Patient Advocacy Summit September 22-23, 2016. Hope to see you there.
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. H.R.5052, known as the OPEN ACT, is a bipartisan legislation that could double the number of treatments available to rare disease patients, has not yet been passed by Congress. 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 and independent business owner. He lost his mother to LMS in 2015 and wants to help our cause. Welcome, Ofir!
Shop & Donate
Thank you for shopping at Amazon Smile and designating a percentage of the profit to LMSdr. You raised $430 within the last six months! New users can register at Smile.Amazon.com
- September 12th, Memorial Sloan Kettering Sarcoma Patient Education: Ask the Experts
- September 17th, Dana Farber Sarcoma Educational Conference 7:30am – 2pm
- September 22–23 Rare Disease Advocacy Summit, Huntington Beach, California
- September 24th, Immunotherapy Patient Summit, NY or watch live stream
- October 8th, LMS Educational Symposium, 10am – 3pm Siteman Cancer Center, St. Louis, MO. Email Annie for registration
- October 15th, Slay Sarcoma 5K Run/Walk, Yardley, PA. Participate virtually!
- July 15th, ZUMBATHONs in Staten Island, NY – Gladys Faccini raised $4,300!
- July 15th LMS Awareness Day during Sarcoma Awareness month