THE SARC RESEARCH ADVOCACY COUNCIL The NLMSF is a member of the SARC Research Advocacy Council tobring the voice of LMS patient community to the table through to: * Developing recommendations and providing input based on experience and understanding... Read More...
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The following video is provided by an LMS SURVIVOR and supporter of the NLMSF. She prepared this video at the request of the Foundation, especially for you.
Here's What's New!
NLMSF RESEARCH ROUNDTABLE-“SCIENTIFIC RESEARCH THINK TANK”
The Heroes Among Us – The Research Scientific Think Tank* Moving forward with work groups addressing major topics identified for proposed studies* Work groups taking action between annual meetings * 2020, 2021 Scientific Research Think Tank Roundtable meetings planned... Read More...
Read MoreNLMSF NCI MyPART Announcement-“FOR PATIENT PARTICIPATION”
THE NATIONAL LEIOMYOSARCOMA FOUNDATION ( NLMSF) JOINS THE NCI MyPART NETWORK The NLMSF has joined the National Cancer Institute (NCI) My Pediatric and Adult Rare Tumor (MyPART) Network as an advocacy partner to represent the LMS... Read More...
Read MoreLMS News Tracker 5/14
Previous LMS News Tracker 5/28 Facebook Twitter LMS News Tracker 5/14 July 27, 2019 Chris Hancock News Tracker Uncategorized May 14, 2019 Topics of the Week! Link To Full Article Here: Link: NLMSF Navigator Measles and Cancer Patients ... Read More...
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Star of Hit NBC Comedy “Frasier” and CBS Drama “Scorpion”
Peri Gilpin
“My family has been touched by Leiomyosarcoma, not once, but twice. I know the heartbreak of this rare disease, and I believe that being aware of what to look for and asking the right questions is so important on this journey.
When my mom was diagnosed years ago, there wasn’t as much information out there about this specific form of cancer. The doctors discovered it in her spine, where it had lain for years, undetected. She lost at least two vertebrae during her first emergency surgery. Many years later, my sister went through the same thing! She went into the hospital due to terrible pain and was sent to get an MRI. She had to be rushed to another hospital and had two vertebrae removed. My sister’s prognosis, however, was better than my mom’s because doctors knew what to look for, based on family history.
Doctors won’t always make the connection or know everything about your family history, so you need to be an advocate for yourself and your loved ones and research all that you can. My mom said, “Make friends with your cancer,” and that is so true. When you’re doing your research, check out the National Leiomyosarcoma Foundation and their website to see what they can offer in terms of patient support and advocacy, funding efforts for LMS treatment advancements, and medical research information. It is so important to stay informed and know that you’re not alone in fighting this battle. I truly believe that if we can all get on board to bring awareness and help find a cure for cancer in general, we can make a difference for all of us affected by the many forms of this disease, like Leiomyosarcoma. There is hope, one step at a time.”
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