Back in 2002, when I was diagnosed with leiomyosarcoma (LMS), there was only one treatment available… “AIM,” which stood for Adriamycin (doxorubicin), ifosfamide and mesna. It was not effective for the majority of LMS patients. Patients did not live much longer than 2-5 years.
In 2004, convinced that only research could help come up with treatments that would work for us, I attended CTOS, the scientific conference for sarcomas. For three days the researchers shared their most recent studies. There were none on LMS. I cried. I felt doomed.
I vowed to get researchers to study LMS. So began Leiomyosarcoma Support & Direct Research Foundation (LMSDR.) Not only would money go directly for research, (we have no paid staff or overhead) we would help direct the researchers towards LMS by offering grants.
Since 2005, we have organized a 500 tumor tissue collection donated directly by patients, a blood collection to study circulating DNA, sponsored over 17 studies which had very significant targets, established an LMS patient registry, put on four LMS conferences, held an LMS patient advocate training and started a Face Book group of over 3,000 LMS families.
These accomplishments were only possible with past support of LMS families. Since 2006, patients and loved ones have donated all the money which funded important studies. Patients donated their paraffin tissue blocks to our LMS tissue bank, joined our registry, gave blood, attended conferences and helped volunteer for LMSDR.
If YOU have benefited from our work, in any way, please pay it forward and make a donation now to help us continue our mission to help save lives. A donation made today helps us all have a more promising future. crowdrise.com/show-your-love-lms
Sharon Anderson MSW
President, Leiomyosarcoma Support & Direct Research Foundation