Then and Now: 1997 to the Present

THEN

A Diagnosis of Leiomyosarcoma was not a familiar cancer diagnosis.

It was an "unknown"  . . . .a difficult cancer to spell, pronounce understand.
There was limited information available; limited support resource information to locate and access.

    

NOW

Robust, ongoing daily, weekly, monthly, annually -  reach out capability

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*  THREE  Foundation websites:  for each phase of the diagnosis and treatment journey:
 -  www.nlmsf.org -  Newly Diagnosed Patients and their Families/ Caregivers - resource assistance/support Annual patient program information/recordings;  LMS Community Live Helpline.
 
- leiomyosarcoma.info - Research Update/Clinical Trial Resource Listings; Webcasts; Interviews with Researchers; Research presentation recordings'  patient data/tissue donation information that impacts research.
 
https://nlmsflifechange.wordpress.com/ -  Life Change - "A New Normal"- what's next after treatment is completed. Hope on the Horizon Blog. How to Rebuild Quality of Life.
 
-  LMS / SARCOMA COMMUNITY DEDICATED HELPLINE for patients and caregivers:  888.264-4760
Monday - Friday  9 am - 9 pm EST;  Monday responses to  weekend messages left 
 
*  Weekly NLMSF Navigator News-  Research Updates/ Clinical Trial alerts, webcasts, webinar information, interviews, recorded 
    presentation information alerts.
*  LMS LIVE CONNECT  Patient- Patient / Caregiver- Caregiver Monthly Telecon through the Foundation teleconferencing capability.  Monthly reminders to the LMS Community
*  NLMSF  FACEBOOK -  Facebook.com/NationalLMSFoundation
*  Twitter.com/NationalLMSF@NationalLMSF
*  Blog:  Hope on the Horizon webpage of the https://nlmsflifechange.wordpress.com/ website

THEN     

Isolated investigational
research /limited clinical trials   

Limited Treatment options
Only chemotherapy developed
30 years ago      

Limited ongoing communication / reach-out through the Foundation

Limited access to NLMSF information

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Limited if any collaborative
partnerships with other
support organizations                                                                                                                          

THEN

on Collaboration with  . . .  

NOW

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Collaboration with multiple organizations in partnership with the NLMSF to offering expanded patient/caregiver/ family resource information to support and assist.  

NOW

The NLMSF-SPAEN INTERNATIONAL LMS RESEARCH ROUNDTABLE - an LMS-specific investigational research initiative launched by the NLMSF, and subsequent partnership with the Sarcoma Patient European Network (SPAEN).  Collaborative research projects to advance breakthroughs that can accelerate treatment options is the goal.  Additionally, the development of LMS -specific guidance to standardize patient care and treatment protocol will be another key goal.
Monthly Patient-Caregiver LMS Live Connect -  telephone conversations;  Facebook group;  Twitter;  website blogs through "Hope on the Horizon" within the Foundation's  LIFE CHANGE -  "A New Normal" website.

Amplified Sarcoma/LMS research, investigational LMS studies/clinical trials involving global scientists

NEW DRUG THERAPIES WERE APPROVED BY THE FDA FOR TREATMENT

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THE CANCER CELL LINE PROJECT  -

The Rare Cancer Research Foundation and the Broad Institute of MIT/Harvard through collaboration with the NLMSF, have included Leiomyosarcoma as one of the rare cancers to cultivate Cell Lines through (deidentified) fresh tumor tissue acquisition from patients prior to surgery. The de-identified tissue samples are processed in several phases for ultimate global accessibility for research initiatives, and CRISPR analysis for drug development.

New and growing treatment options with new dual therapy agents (combined protocols)

COLLABORATION:  A mission objective of the NLMSF       

Collaborative alliances/partnerships to enhance/expand
patient/family/caregiver resources/support/assistance

Reaching For the Cure Together