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National Leiomyosarcoma Foundation
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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Receive the latest research news and community updates
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A guiding light for patients and caregivers facing a LeioMyoSarcoma diagnosis.
A quiet space for words, hope, and connection.
Joseph Jang
Boulder 70.3 & Ironman California
Training for two IRONMAN races to raise funds for NLMSF-supported LMS research. Every swim, bike, and run represents a step forward in the fight against leiomyosarcoma.
What Our Experts Say
Neeta Somaiah, MD
Sarcoma Medical Oncologist, MD Anderson Cancer Center
"You are the sweetest. I can see how your compassion and affection positively impact everyone around — across all generations, family, and beyond."
Brian Van Tine, MD
Sarcoma Program Director, Alvin J. Siteman Cancer Center
"I love this group, it makes a difference."
Seth Pollack, MD
Professor, Northwestern University Feinberg School of Medicine
"I love the NLMSF – I love the patient programs held – your signature support advocacy to collaborate with sarcoma centers..."
Arun Singh, MD
Director of UCLA Sarcoma Medical Oncology
"The National Leiomyosarcoma Foundation is an important organization that strives to gather a critical mass of patients, scientists, patient advocates and physicians..."
Voices from the Community
What People Say About NLMSF
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.”
Storm Therapeutics STC-15 — Phase 2 Clinical Trial
NCT06975293 · Leiomyosarcoma & Liposarcoma
Storm Therapeutics is actively enrolling patients with leiomyosarcoma (uterine & non-uterine) and liposarcoma into this Phase 2 study of STC-15, a first-in-class oral METTL3 inhibitor. STC-15 targets the biological process that drives cancer cell formation — a completely new mechanism for treating LMS. Trial sites are now open across the United States.
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Important Videos & Education
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.
Our Mission
To support the LMS patient, family, and caregiver community through education, information sharing, resource assistance, and 24/7 direct phone support.
To address unmet needs in treatment, research, clinical trials, and care through the Foundation's International LMS Research Roundtable—collaborating with researchers, clinicians, partner organizations, and especially the LMS community—to achieve meaningful progress.
To fund LMS-specific research that advances the field of study and accelerates development of clinical trials and treatments.
To raise global, national, and community awareness of this disease, prioritizing actionable goals and delivering measurable progress.
Learn More About Us
Annual Accountability Reports
Access our comprehensive annual reports documenting our progress, achievements, and financial stewardship
2024
Latest Report2024 Accountability Report
Our comprehensive 25th anniversary report detailing research funding, grant awards, repurposed drug initiatives, and expanded international collaborations.
- ✔ Research Awardees
- ✔ 60+ Roundtable Researchers
- ✔ Repurposed Drug Initiative
- ✔ International Collaborations
2023
Previous Report2023 Accountability Report
Our annual report highlighting achievements in leiomyosarcoma research, patient support programs, and community advocacy initiatives.
- ✔ Research Awardees
- ✔ SPORE LMS Project
- ✔ MD Anderson Collaboration
- ✔ 24 Years of Service
Our Partners
Working together with leading organizations to advance LMS research and patient care
Dr. Raphael Pollock, M.D., Ph.D
James Cancer Center, Ohio State Univ
The NLSMF 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...
Arun Singh, M.D.
Associate Professor, Sarcoma Service
The National Leiomyosarcoma Foundation is an important organization that strives to gather a critical mass of patients, scientists, patient advocates and physicians to learn more about this rare disease...
From Patients and Caregivers to You
Hear directly from LMS survivors and specialists who have been where you are. Their stories provide insight, guidance, and hope for your journey.
Dr. Mitch Achee
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 VideoTembi Locke
Actress & 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 VideoChandalyn Williams, Ph.D
NLMSF 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.
Join Our Mission To Support The LMS Community
Your support makes a real difference in the lives of patients and families affected by LMS.