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Debie G.

48 profile views
1 reviews

Review for Lmsarcoma Direct Research Foundation, Tulsa, OK, USA

Rating: 5 stars  

I was diagnosed in 2010 about a week after surgery. I found a lot of information but no real support until finding LMSdr. I was added to a listserv and once approved by a monitor had access to communicate and learn from a group of people who have fist hand experience with this rare disease. Everyone was welcoming and I found people in my State to connect with. One person reached out with almost the exact experience, stage, grade as me that created an immediate bond. Before this group, I felt alone and scared. The listserv group, Facebook group and website is a plethora of resources. LMSdr teaches us how to always be "Working not Wishing for a Cure" by setting up ways to participate by donating a parrifin block of your tumor and other specific reasesrch you can participate in. I love that I can make a difference by participating in reasearch, share my experience with others and when I make purchases with a donation is made to LMSdr.

Role:  Volunteer