July 15National LMS Awareness Day

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Supporting the LMS Community Since 1997

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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A guiding light for patients and caregivers facing a LeioMyoSarcoma diagnosis.

SpotlightJAMA Oncology · September 10, 2026

First international consensus on leiomyosarcoma care

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.

Your Journey

Tap a stage for matched NLMSF resources

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Now RecruitingTrial Alert

Storm Therapeutics STC-15

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.

At the Heart of This Foundation

  • Every LMS diagnosis deserves to be understood individually. Every patient deserves access to knowledgeable specialists. And every patient deserves hope grounded in good information.
  • The NLMSF wants to make the science understandable, the resources accessible, and the patient voice stronger and at center stage!
  • When patients are newly diagnosed with leiomyosarcoma, they can feel frightened, overwhelmed, and unsure where to turn.
  • You are here on this website now for clear, understandable information to help a patient ask better questions, advocate for themselves, and feel totally supported — and know that . . .

You will not have to face this journey alone.

The National Leiomyosarcoma Foundation (NLMSF) is here to help you find information, resources, and full comprehensive support along the entire cancer journey and long term to enhance quality of life in long-term survivorship.

LMS Lifeline

24/7 — We Are Here for You

(303) 808-3437or (303) 783-0924

Story shared with NLMSF

DEB GATES - LMS 30 YEAR SURVIVOR, THRIVER, RESEARCH ADVOCATE

CHAMPION OF HOPE

Running in memory of Stephen A. Gates, MD

Seattle Marathon 2026. Champion of Hope — an LMS survivor tells her powerful story and is a champion for fundraising to advance LMS research and accelerate LMS treatment options. Deb is representing all and fighting this disease through funding LMS-specific research through the Seattle Marathon — let's run with her in our hearts. Run with Deb for the sake of funding LMS research and advancing survivorship.

AT THE HEART OF THE NATIONAL LEIOMYOSARCOMA FOUNDATION

Every leiomyosarcoma (LMS) diagnosis deserves to be understood individually. Every patient deserves access to knowledgeable specialists. And every patient deserves hope grounded in credible information and advances in research.

Read the entire message

Our commitment

Through our website, educational programs, resources, and direct support, NLMSF is committed to helping patients and their families and caregivers:

  • Understand your diagnosis through clear, credible, patient-friendly information.
  • Ask informed questions and have more meaningful conversations with their healthcare team.
  • Find knowledgeable specialists and resources to help guide their care.
  • Strengthen YOUR voice and advocate for themselves throughout their journey.
  • Feel supported and empowered from diagnosis through treatment, survivorship, and beyond.
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Autumn harvest scene with pumpkins and fall leaves

November: A Time to Reflect, Recognize, and Reconnect

As we move through the month of November, we are reminded that gratitude takes many forms. For those living with sarcoma / leiomyosarcoma, gratitude does not mean that every day is easy, that every scan brings good news, or that the uncertainty of tomorrow disappears. It means recognizing the strength it takes to keep moving forward, even when the road is difficult.

To our patients: Your courage is not measured by how strong you appear, how many treatments you endure, or how positively you face each day. You are allowed to have difficult days. You are allowed to ask questions, seek answers, express your fears, and lean on others. Your voice matters. Your life matters. And you deserve knowledgeable care, compassion, and hope grounded in continued research and progress.

To our caregivers: We see you, too. Your presence, advocacy, encouragement, and unwavering commitment often become the steady foundation beneath someone else's difficult journey. Please remember that your well-being matters, too. You cannot pour endlessly from an empty cup.

To everyone in our LMS community: Remember that none of us should have to navigate this journey alone. This November, let us be intentional about reaching out, listening, sharing knowledge, supporting one another, and recognizing the people who make a difference in our lives. Hope is strengthened when we stand together. Knowledge empowers us. Compassion connects us. And community reminds us that we are never alone.

With gratitude and continued commitment,
— Your NLMSF Support Team

Family Caregivers Month

Voices from the Community

What People Say About NLMSF

View All

Research Experts & Clinicians

Neeta Somaiah, MD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

C

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.”

C

Catharine

Patient & Family

“You and Mitch are heroes to our family.”

R

Rebecca

Patient & Family

“Thank you, you both are a light where there is fog.”

D

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.”

S

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.”

C

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.”

P

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.”

M

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.”

E

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.”

C

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.”

C

Catharine

Patient & Family

“You and Mitch are heroes to our family.”

R

Rebecca

Patient & Family

“Thank you, you both are a light where there is fog.”

D

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.”

S

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.”

C

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.”

P

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.”

M

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.”

E

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.”

Shared Voices
New Community PlatformsShared Voices

A Quiet Space for Words, Hope, and Connection

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.

Patients Platform

For patients walking the leiomyosarcoma journey.

Here, patients, survivors, and family members are invited to share:

  • A sentence that carried you through the day
  • A reflection on what this journey has taught you
  • A note of encouragement for someone you've never met
  • A memory you want to honor
  • A moment of light in the midst of uncertainty

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.

Go to the Patients Platform

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Caregivers Platform

For caregivers supporting someone on the leiomyosarcoma journey.

Here, caregivers and family advocates are invited to share:

  • A sentence that helped you show up for someone you love
  • A reflection on what caregiving has taught you
  • A note of encouragement for another caregiver
  • A memory you want to honor
  • A moment of strength when the path felt uncertain

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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Educational Resources

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.

NLMSF Impact in Action

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.

Learn More About Our Mission

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Annual Accountability Reports

Access our comprehensive annual reports documenting our progress, achievements, and financial stewardship

2025

Latest Report

2025 Accountability Report

Full 2025 report to the LMS-sarcoma community — research awardees, Berlin Roundtable, Count Me In evaluation, and moving forward in 2026.

  • ✔ Berlin Research Roundtable
  • ✔ Canter NK-cell award
  • ✔ Count Me In evaluation
  • ✔ Sharing Voices forums

2024

Previous Report

2024 Accountability Report

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 Report

2023 Accountability Report

Annual report highlighting achievements in leiomyosarcoma research, patient support programs, and community advocacy initiatives.

  • ✔ Research Awardees
  • ✔ SPORE LMS Project
  • ✔ MD Anderson Collaboration
  • ✔ 23 Years of Service
28+
Years Supporting Patients
5,000+
Patients Assisted
$2M+
Research Funding
24/7
Support Available

Our Partners

Working together with leading organizations to advance LMS research and patient care

AACRASCOBroad InstituteCancerCareDana-Farber
Patient and Caregiver Perspectives

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 Video

These 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.

National Leiomyosarcoma Foundation | NLMSF