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!
EXTREMELY helpful. My family so appreciates the hope this group has given and the information to help with questions to ask doctors.
Talk about good information! This foundation helps and shares with those of us who have unluckily needed the Support! The group is on top of the newest treatments out there and ready to share.
I’m a leiomyosarcoma caregiver and a donor to LMSDR. Leiomyosarcoma is a rare cancer that until not too long ago I’d never heard of. This disease needs more research but its not that big of a “market”. LMSDR channels donations directly to researchers, and it provides a place for us to share experiences and compare notes. Its a very deserving cause. Thanks LMSDR.
Without LMSdr - I can't fathom what my life would be like. The information and support given is unparalleled.I was given old statistics and antiquated answers from local oncology team. LMSdr put me in touch with others who gave me good information/real information- referrals - and hope.
LMSDR is a lifesaver! I find information and support at my fingertips. I can go through their website, facebook group, or monthly e-letter to keep up with the latest research and treatments. The facebook group and retreats are a great way to meet other survivors and get support. It's easy to donate, since they are also signed up with groups such as Igive and amazon smiles.
The information and support is so helpful. In more ways than one, LMSdr has been a life saver.
LMSdr has been my lifeline to the community of people living with leiomyosarcoma, a rare and aggressive cancer. LMSdr's first priority is fundraising to support research into this rare cancer. But its other functions have personally benefitted me the most. LMSdr sponsors a very active Facebook page, where those of us suffering from this rare disease can come to know and support each other. It hosts an informational website and newsletter to keep us current on the latest research & developments. And it sponsors retreats!
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