LMSdr has been a tremendous source of information, support, guidance, and realistic hope since I was diagnosed with this rare and aggressive cancer about a year ago. It hosts a wonderful worldwide FB page for people and their loved ones who have this diagnosis. It is well monitored and a tremendous source of information and support. LMSdr does everything possible to help people find a cure for this rare cancer, including identifying scientific research projects for financial support, helping people host fundraisers, organizing a tissue bank and blood samples for research purposes, hosting seminars, providing recordings of past seminars, the list goes on and on. I have contributed greatly to LMSdr, and have encouraged friends, colleagues, and relatives to do likewise. A tremendous percentage of what LMSdr collects goes directly to LMS research. Their expenses are low as the organization is completely volunteer-run. I simply cannot praise LMSdr enough!
I'm so lucky that I found this group. It's very hard to find information and support for a disease that is very rare. I get fantastic information and constant updates on any trial available as well as advice, support and valuable information about treatments that my fellow LMSdr friends are trying. I get real life information on side effects and "tricks" to avoid them. We mourn losses together and we celebrate victories . I am very lucky to be a part of this group.
When I was first diagnosed with this cancer I read everything I could find on the internet. The information was daunting and gave me a very small chance at 5 year survival. I wanted to know patients stories and finally decided to do a search on Facebook. I found LMSarcoma Direct Research (LMSDR) and it became a home. The fellow patients and caregivers are amazing with support and information. The conferences they host are full of good information given by talks from excellent oncologists. LMSDR gives grants to researchers who are working for a way to control Leiomyosarcoma without further harm to the patient. They have set up both a blood bank and tumor slide collection for researchers to use. LMSDR helped me to change my fear of imminent death to one of hope. There is much work to be done but if research stays ahead of the current therapies there is hope for people with LMS.
LMS Direct Research has been an amazing resource for education and support. A must for anyone (like myself) who gets the daunting diagnosis of LMS, an aggressive and lethal cancer.
The Foundation prides itself on working to get samples to researchers to try and accelerate science to find a better treatment and hopefully a cure
Love this organization! All funds raised go directly to research for cure/treatments for LMS. Beyond that seminars/ retreats with top researchers are held. This is a worldwide organization providing support, info to patients as well. Can't say enough about this org.
LMSarcoma Direct Research Foundation (LMSdr) raises money for research for leiomyosarcoma, a very rare sarcoma on the smooth or involuntary muscles. LMSdr has all volunteer staff who work out of their own homes - so true to their name, money goes directly to research. They have put on patient conferences, advocate trainings and webinars. Even though there are only about 1276 LMS patients in the US... they have a Face Book support group of 1450 patients and loved ones. Their newsletter reaches 2000. This foundation is the life-line for LMS families.