July 15National LMS Awareness Day
Providing education, support, research funding and advocacy for the
Global LMS Community as we move forward in the quest for the cure.
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A guiding light for patients and caregivers facing a LeioMyoSarcoma diagnosis.
Management of Soft Tissue and Visceral Leiomyosarcomas
The Leiomyosarcoma Global Consensus Group — clinicians, researchers, and patient advocates, including the National Leiomyosarcoma Foundation — published the first international consensus on the diagnosis and management of soft tissue and visceral leiomyosarcoma. It sits alongside the 2021 NLMSF consensus paper in Cancers.
Tap a stage for matched NLMSF resources
Phase 2 · NCT06975293 · LMS & Liposarcoma
STC-15 is enrolling patients with leiomyosarcoma and liposarcoma — a first-in-class oral METTL3 inhibitor with trial sites open across the U.S.
Story shared with NLMSF
Running in memory of Stephen A. Gates, MD
Deb says she ran the Seattle Marathon on November 30, 2007 — her husband's birthday — in memory of Stephen A. Gates, MD, and that she is the longest uterine leiomyosarcoma survivor in the world, 30 years out. She shared her story with the National Leiomyosarcoma Foundation.
Our commitment
Through our website, educational programs, resources, and direct support, NLMSF is committed to helping patients and their families and caregivers:
Voices from the Community
Research Experts & Clinicians
Neeta Somaiah, MD
MD Anderson Cancer Center
Research Expert
“You are the sweetest. I can see how your compassion and affection positively impact everyone around — across all generations, family, and beyond.”
Dr. Raphael Pollock
Research Expert
“The NLMSF provides a vital link between the community, including LMS patients, and the oncology researchers who work tirelessly to help develop a better understanding of this rare disease, with the direct intent to provide sorely needed new therapeutic approaches.”
Dr. Roberta Sanfilippo
Research Expert
“The LMS Roundtable offers the possibility to work with all researchers in the world dedicated to a rare tumor such as LMS. It is an honor to lead the gynecological working group within the NLMSF-SPAEN International Research Roundtable.”
Dr. Rebecca Gladdy
Research Expert
“I am very much engaged in understanding LMS and hoping to improve care. Annie and Mitch are such great patient advocates which I admire.”
Dr. W. J. Van Houdt
Research Expert
“I strongly support the NLMSF in their efforts to fight LMS by bringing together world-wide experts - this is a major achievement. Together we are stronger and smarter to fight this disease.”
Dr. Matthew Hemming
Research Expert
“The essential benefit arising from the Foundation's LMS Roundtable working groups is the opportunity to bring an assembly of researchers and clinicians into a conversation that spans basic research to clinical application. By working together we learn from each other's expertise and build future innovations in LMS patient care.”
Dr. Seth Pollack
Research Expert
“I love the NLMSF — your signature support advocacy to collaborate with sarcoma centers. LMS is common enough to have had a specific focus initiative, and the NLMSF was many steps ahead of the curve to launch the LMS International Research Roundtable.”
Dr. Sebastian Bauer
Research Expert
“Dear Annie and Mitch — Thank YOU for supporting the cause. You could have just done other stuff. But you choose to fight for this disease. It makes and will further make a difference!”
Neeta Somaiah, MD
MD Anderson Cancer Center
Research Expert
“You are the sweetest. I can see how your compassion and affection positively impact everyone around — across all generations, family, and beyond.”
Dr. Raphael Pollock
Research Expert
“The NLMSF provides a vital link between the community, including LMS patients, and the oncology researchers who work tirelessly to help develop a better understanding of this rare disease, with the direct intent to provide sorely needed new therapeutic approaches.”
Dr. Roberta Sanfilippo
Research Expert
“The LMS Roundtable offers the possibility to work with all researchers in the world dedicated to a rare tumor such as LMS. It is an honor to lead the gynecological working group within the NLMSF-SPAEN International Research Roundtable.”
Dr. Rebecca Gladdy
Research Expert
“I am very much engaged in understanding LMS and hoping to improve care. Annie and Mitch are such great patient advocates which I admire.”
Dr. W. J. Van Houdt
Research Expert
“I strongly support the NLMSF in their efforts to fight LMS by bringing together world-wide experts - this is a major achievement. Together we are stronger and smarter to fight this disease.”
Dr. Matthew Hemming
Research Expert
“The essential benefit arising from the Foundation's LMS Roundtable working groups is the opportunity to bring an assembly of researchers and clinicians into a conversation that spans basic research to clinical application. By working together we learn from each other's expertise and build future innovations in LMS patient care.”
Dr. Seth Pollack
Research Expert
“I love the NLMSF — your signature support advocacy to collaborate with sarcoma centers. LMS is common enough to have had a specific focus initiative, and the NLMSF was many steps ahead of the curve to launch the LMS International Research Roundtable.”
Dr. Sebastian Bauer
Research Expert
“Dear Annie and Mitch — Thank YOU for supporting the cause. You could have just done other stuff. But you choose to fight for this disease. It makes and will further make a difference!”
Patients & Caregivers
Cathy
Patient & Family
“There are no words, Annie, for my gratitude for the work you and Mitch are doing and for the human, loving way you do it, especially now with the government halt on science and research in a time when my daughter needs both so desperately. Your work and caring are lights out there. Never doubt that there are thousands of us sending hope and gratitude to you every day.”
Catharine
Patient & Family
“You and Mitch are heroes to our family.”
Rebecca
Patient & Family
“Thank you, you both are a light where there is fog.”
David Matanic
Patient & Family
“I was diagnosed with LMS just one week ago. Annie Achee and her husband called me and spent about 45 minutes telling me what to expect, what questions to ask and the kind of specialists I would need. It was the most valuable 45 minutes of my life so far. My stress level went down dramatically.”
Sharon
Patient & Family
“Annie and Mitch are both so special, and make me want to live in this world. I love you guys and NLMSF.”
Cathie
Patient & Family
“NLMSF is a wonderful place to help you feel that you are not alone in your LMS journey. You will have access to knowledge, practical tips, resources, and, best of all, contact with others who may be newly diagnosed or long term thrivers.”
Pamela
Patient & Family
“In 2012, I was diagnosed with leiomyosarcoma, but had never heard of it. Annie Achee has been my life coach through this. If I'm concerned about any treatment, I can call her for guidance. Thank you for your love and support.”
Michelle
Patient & Family
“I found NLMSF 3 years after my diagnosis of LMS; wish I'd found them sooner. The resources and information they provide is so helpful and the foundation's commitment to furthering research on this disease is vital.”
Emily
Patient & Family
“Thank you so much for your note. You two make our whole family feel enfolded in your care and love. We are so grateful for you.”
Cathy
Patient & Family
“There are no words, Annie, for my gratitude for the work you and Mitch are doing and for the human, loving way you do it, especially now with the government halt on science and research in a time when my daughter needs both so desperately. Your work and caring are lights out there. Never doubt that there are thousands of us sending hope and gratitude to you every day.”
Catharine
Patient & Family
“You and Mitch are heroes to our family.”
Rebecca
Patient & Family
“Thank you, you both are a light where there is fog.”
David Matanic
Patient & Family
“I was diagnosed with LMS just one week ago. Annie Achee and her husband called me and spent about 45 minutes telling me what to expect, what questions to ask and the kind of specialists I would need. It was the most valuable 45 minutes of my life so far. My stress level went down dramatically.”
Sharon
Patient & Family
“Annie and Mitch are both so special, and make me want to live in this world. I love you guys and NLMSF.”
Cathie
Patient & Family
“NLMSF is a wonderful place to help you feel that you are not alone in your LMS journey. You will have access to knowledge, practical tips, resources, and, best of all, contact with others who may be newly diagnosed or long term thrivers.”
Pamela
Patient & Family
“In 2012, I was diagnosed with leiomyosarcoma, but had never heard of it. Annie Achee has been my life coach through this. If I'm concerned about any treatment, I can call her for guidance. Thank you for your love and support.”
Michelle
Patient & Family
“I found NLMSF 3 years after my diagnosis of LMS; wish I'd found them sooner. The resources and information they provide is so helpful and the foundation's commitment to furthering research on this disease is vital.”
Emily
Patient & Family
“Thank you so much for your note. You two make our whole family feel enfolded in your care and love. We are so grateful for you.”
Welcome to Shared Voices, a quiet, protected space created for reflection, encouragement, and connection. This is not a medical forum. It is a place for words—simple words, honest words, hopeful words—shared by people who understand the leiomyosarcoma journey.
For patients walking the leiomyosarcoma journey.
Here, patients, survivors, and family members are invited to share:
You do not need to be a “writer.” You do not need to have the right words. One sentence is enough.
Every post becomes part of a living circle of hope—words that others may read at 2 a.m. when sleep will not come, or on a day when courage feels thin.
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For caregivers supporting someone on the leiomyosarcoma journey.
Here, caregivers and family advocates are invited to share:
You do not need to be a “writer.” You do not need to have the right words. One sentence is enough.
Every post becomes part of a living circle of hope—words that other caregivers may read at 2 a.m. when sleep will not come, or on a day when courage feels thin.
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Access our comprehensive library of educational videos, webinars, and resources designed to help patients, caregivers, and healthcare providers better understand LMS.
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Stay updated with the latest LMS news and support resources.
A visual overview of how the National Leiomyosarcoma Foundation advances research, strengthens the global LMS community, and supports patients, caregivers, and families across key programs and initiatives. Click the image to view it at full size.
Access our comprehensive annual reports documenting our progress, achievements, and financial stewardship
Full 2025 report to the LMS-sarcoma community — research awardees, Berlin Roundtable, Count Me In evaluation, and moving forward in 2026.
25th anniversary report detailing research funding, grant awards, repurposed drug initiatives, and expanded international collaborations.
Annual report highlighting achievements in leiomyosarcoma research, patient support programs, and community advocacy initiatives.
Working together with leading organizations to advance LMS research and patient care
Hear directly from LMS survivors and specialists who have been where you are. Their stories provide insight, guidance, and hope for your journey.
Diagnostic RadiologistLMS SurvivorChairman, NLMSF Medical Advisory Board
“As both a medical professional and an LMS survivor, I understand the importance of accurate information and community support in navigating this complex journey.”
Watch Full VideoActress & AuthorNLMSF Technical Advisor
“From Scratch chronicles my personal LMS journey with my husband. The NLMSF provided invaluable guidance, which is why I selected them as the technical advisor for the Netflix adaptation of my memoir.”
Watch Full VideoNLMSF Board Member
“The NLMSF serves as a guiding light to face the LMS journey. Their resources and community support make a significant difference in the lives of patients and caregivers.”
Watch Full VideoThese personal stories offer unique insights from those who understand what you're going through. Remember, you're not alone on this journey.
Your support makes a real difference in the lives of patients and families affected by LMS.
