Advancing research, accelerating treatment options, and providing supportive resources for the LMS community
"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."
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"
Patients and family came together for the first time, called annual Hugfest, from 1997 to 2001, which later became the NLMSF.
Foundation founded by a Caregiver in honor of his wife to support and advocate for patients and fund research. Originally, a gathering place for peer-to-peer support.
The NLMSF Research Project Support Funding history: View Research Projects
Patient education programs began at sarcoma centers of excellence and the evolution of the Foundation has been remarkable.
The NLMSF collaborate with several cancer/sarcoma working groups throughout the US and Canada to strengthen and amplify patient – family/caregiver resource support.
The NLMSF reached out for support from Congress for National Leiomyosarcoma Awareness Day – July 15.
Congress passed the Resolution: View Resolution
The NLMSF launched the International Leiomyosarcoma Roundtable, now with 120 research members in global support. Learn More
Sarcoma PatientsEuro.Net partner with the NLMS in support of the International LMS Research Roundtable.
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.
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.
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.
The NLMSF has funded critical research initiatives and fostered collaboration among leading scientists worldwide, accelerating the development of new treatments and improving patient outcomes.
Thank you for joining the NLMSF FB Support Group to build a strong LMS Community of Caring and Sharing!
Facebook Community Members
Research Roundtable Members
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 AmbassadorGrateful to you all - Annie Achee | Honoring the LMS Community | (President NLSMF since 2015)
