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NLMSF Logo

Our Enduring Mission is Our Passion

Advancing research, accelerating treatment options, and providing supportive resources for the LMS community

THE MISSION AND GOALS OF THE NATIONAL LEIOMYOSARCOMA FOUNDATION

  • To fund LMS-specific research that advances the field of study and accelerates development of clinical trials and treatments.
  • To support the LMS patient, family, and caregiver community through education, information sharing, resource assistance, and 24/7 direct phone support.
  • To raise global, national, and community awareness of this disease, prioritizing actionable goals and delivering measurable progress.
  • 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.

Expert Testimonial

"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. Within the NLMSF, the LMS Research Roundtable organizes cutting edge research in this area and strives to innovate the ways that this disease is treated."

Arun Singh, M.D.

Associate Professor Sarcoma Service

Division of Hematology

UCLA, Santa Monica, CA

View More Testimonials

The Founders of the Foundation

First Founding Members

  • Edmund and Nancy Hoag
  • Harry and Diana Froling
  • Donna and Joe Fischer
  • Ken and Karen Gibson

These families were dedicated and committed to the mission of building support for the LMS patient/family Community.

"The National LMS Foundation was the first to galvanize patients and researchers for advocacy, support, and education for the LMS Community in 2001 and the first to bring together researchers from around the world to privately fund LMS Research in the search for a cure"

History of the Foundation

Key Milestones

2020

Sarcoma PatientsEuro.Net partner with the NLMSF in support of the International LMS Research Roundtable.

2019

The NLMSF launched the International Leiomyosarcoma Roundtable, now with 120 research members in global support. Learn More

2016

National Leiomyosarcoma Awareness Day – July 15 approved by Congress.

View Resolution

2015

The NLMSF began collaborating with cancer/sarcoma working groups across the US and Canada to strengthen patient–family/caregiver resource support.

2012

Patient education programs launched at sarcoma centers of excellence.

2002

Foundation incorporated and began funding LMS-specific research. View Research Projects

2001

Foundation founded by a Caregiver in honor of his wife to support and advocate for patients and fund research.

1997

Patients and families came together for the first annual Hugfest — the gathering that would become the NLMSF.

The Founding Story

Harry and Diana were inspirations to the LMS ACOR online support group, and appreciated their guidance and help. From all this, the Foundation was born and incorporated in 2001.

Nancy Hoag made the signature purple and green ribbons, and her family helped with mailing information to patients, as well as helping her make the ribbons.

Karen Gibson coordinated the first Hugfest events, bringing patients and their families together to support one another in Pennsylvania. At the first Hugfest, Edmund Hoag spoke of creating a foundation to raise awareness and funding for Leiomyosarcoma research.

The Hugfest attendees were all enthused to support this initiative. The Foundation was formed by the support and commitment by the LMS Community. Edmund and Nancy proceeded to secure the needed funding and the first check for LMS research was given to the Research Community.

Karen Gibson (treasurer and secretary of the foundation) and Lynda Hendrix, an LMS patient, created the LMS Quilt to honor patients, and for a hopeful display at the Washington DC mall. Two quilts were created from mailed quilt squares received from across the country.

Notable Achievements

National LMS Awareness Day

In 2016 the NLMSF was successful with Congressional approval for a National LMS Awareness Day - July 15, marking a significant milestone in raising public awareness about Leiomyosarcoma.

NLMSF Support Community

Our Facebook support group grew to over 5,000 members, creating a vital platform for patients and caregivers to connect, share experiences, and find emotional support throughout their LMS journey.

Research Advancement

The NLMSF has funded critical research initiatives and fostered collaboration among leading scientists worldwide, accelerating the development of new treatments and improving patient outcomes.

Community Support

Thank you for joining the NLMSF FB Support Group to build a strong LMS Community of Caring and Sharing!

3,000+

Facebook Community Members

140+

Research Roundtable Members

Get Involved

Join the NLMSF as an Ambassador for Community Awareness of Leiomyosarcoma. Spreading the word is important for community support for the much needed LMS-specific research.

Sarcoma remains the least funded of all cancers for research.

Become an Ambassador

Grateful to you all - Annie Achee | Honoring the LMS Community | (President NLSMF since 2015)