Anyone diagnosed with Leiomyosarcoma soon realizes she/he must learn to be a strong self-advocate on her/his medical team. The National Leiomysarcoma Foundation leaders work tirelessly to provide up-to-date information critical to patient decision making as well as personal support when needed. This foundation provides patients the opportunity to connect directly with sarcoma experts and also with other patients. The NLMSF is a resource any LMS patient can trust.
I am so grateful for the National Leiomyosarcoma Foundations (NLMSF) hard work and dedication to helping so many patients and caregivers with this rare cancer Leiomyosarcoma and reaching out to create awareness and funding to support research to help find treatments and a cure one day. NLMSF continues to charge ahead and contribute to helping so many improve their quality of life with this rare disease. I had the chance to meet Annie Achee the President and her husband Dr Mitch Achee at the Dana Farber Cancer Institute Symposium for GIST and Sarcoma last fall in Boston, MA. It was such a pleasure to meet them in person and learn first hand about the NLMSF. Together we are stronger and the Foundation is surely helping patients become stronger advocates too. Knowledge sharing is key and they continue to share the latest in treatments and resources with it members and the communities. NLMSF is truly making a difference in the quality of our lives. One of the top and the best non profits that care for the interests of everyone.
My cousin Travis was diagnosed with stage IV LMS back in April '16. When Travis was diagnosed countless friends and family were frantic trying to find answers and get help. I reached out to the National Leiomyosarcoma Foundation and within hours Annie Achee emailed me and included her contact info. I called right away and immediately Annie was on the phone with Doctors across the country. Prior to NLMSF we had no resources and no idea what to do or what direction to head in, within hours we were full of Doctors names and numbers to call, we couldn't have been any more thankful than we were for the full help and support of NLMSF. Thank you for all the love, encouragement and direction you were able to provide me and my family, keep up the great work. - Brittney C.
After attending one of the patient programs of the Foundation, I find that patient and family members/caregivers have been helped greatly by the experience of attending to learn so much from the experts in their fields. This Foundation responds to so many in a caring, compassionate way, providing helpful information on may topics that help patients/families get through a difficult diagnosis.
The National Leiomyosarcoma Foundation (NLMSF) is providing valuable support to the leiomyosarcoma patient community, with its collaborative patient education symposia across the USA. The LMS Research Work Group at MD Anderson appreciated
the April 2, 2016 patient program opportunity with the NLMSF, and future LMS research support by the Foundation will be important.
Six years ago, my daughter was diagnosed with peritoneal LMS. Her father and I as well as our daughter knew nothing about this cancer. All we heard was that it was very rare and survival would be limited to many variables. I immediately went to the NLMSF website where I learned about this cancer that few knew about,, as well as doctors who never even treated it.
MIy husband and I received so much support and understanding about LMS when we attended our first Hugfest in Branson, MO.
From then on we became very active in the process of fund raising and spreading the word.
It is amazing how much progress the researchers searching for a cure have made. The support and funds for research given in grants has increased the movement for the CURE Together. Fortunately, our daughter had excellent doctors who watched her closely and today still remains in remission. Thank you NLMSF. I can't stress enough how much NLMSF needs lay people to volunteer to be Ambassadors for the Foundation. Go to nlmsf.org.
I knew nothing about the National Leiomyosarcoma Foundation until a dear friend was diagnosed with this rare disease. This affected the entire family and still does. I have seen this family volunteer many hours in helping promote this foundation. Without the dedication and volunteers like them, there would not be community awareness and the needed research funding for the National Leiomyosarcoma Foundation. As a result, I have come involved with this foundation.
My wife was diagnosed with leiomyosarcoma in 2014. We have been delighted with the information and support provided to us by the NLMSF. The volunteers are so helpful and friendly and understand what I am going through because most of them are or have a family member diagnosed with LMS. I will always support them and thank them.
I was diagnosed with LMS in 2014 and went in search of information about this very rare and terrible disease. The first thing I did was to check online for a support group. I came across NLMSF and was so pleased with the information and support they provide. I soon realized that they were in need of a treasurer and, having done that for many non-profits and boards in my career, applied to do that. I am so glad I did. The board members are wonderful, caring, and supportive people who know what I am going through. I make a monthly donation and always will. Thank you NLMSF!
Where does one go or turn to for support when learning about leiomyosarcoma. It can be a very unsettling experience when even your doctor has never heard of it, seen a case of it, or treated it. It's that rare of a disease (cancer) so it's not surprising to learn that leiomyosarcoma (LMS) doesn't get a lot of attention from researchers or support for research funding or just raising awareness in the medical field and community. UNTIL NOW!!! The NLMSF is a dedicated, passionate group of people that are working together to find a cure. This Foundation raises money to fund LMS specific research, help educate the medical community and public about LMS, and has become a valuable resource to raise the level of awareness through it's website (NLMSF.org) and informational forums. If you truly want to make a difference in the life of others affected by LMS, this is the organization that deserves your involvement.