The National Leiomyosarcoma Foundation has been a great source of information for my family. My dear sister was diagnosed over 12 years ago and the internet can be a scary place for those of us looking for information. Annie and her husband work tirelessly to ensure that accurate and timely information is given out on a regular basis. The Foundation provides many services, but most importantly the much needed information that families need to help them through the maze of the world of Leiomyosarcoma. I highly recommend this nonprofit to anyone dealing with this terrible disease or to those who love them.
The NLMSF is a proactive foundation, anticipating the needs of patients and caregivers/families, through their programs that are supported by many. The new LIVE Helpline for LMs patients is something quite special. My husband and I endorse the NLMSF’s focus for the future on behalf of the LMS Community.
When I was newly diagnosed with leiomyosarcoma the National Leiomyosarcoma Foundation (NLMSF) was one of the organizations that I found extremely helpful in educating myself about this disease. The weekly NLMSF Navigator News is a great source of continued information and the monthly LMS Live Connect teleconconference has been a wonderful way to get questions answered, find resources and connect with other LMS patients nation wide. Annie Achee, NLMSF president, is tireless and passionate in her work with the LMS community.
This organization is doing amazing things to assist patients and caregivers with LMS. Ask-a-clinician, an upcoming phone support line, patient education programs across the country, collaborative work with other organizations, fund-raising for research, and the list goes on! Visit the website for more information.
Previous Stories
NLMSF works tirelessly to fund life-saving research and bring valuable information to patients with leiomyosarcoma. 95% of all incoming donations go to LMS Research. I attended their national symposium in Columbus, OH, in 2015 and learned a great deal about the research and patient care efforts underway by sarcoma specialists working on this rare illness. The beauty of this organization is its personal nature; people know each other and freely share what they are learning to assist other patients. Regional symposiums bring researchers and physicians directly to patients so they can meet and get questions answered. Monthly phone chats provide more personal support. The website offers the latest news in research efforts to find treatments for this relentless disease.
Having a friend diagnosed with sarcoma was such a mysterious sounding disease it left me puzzled as to what it actually was.
Fortunately, a close friend understood my frustration with not knowing a thing about the disease and recommended I turn to the Internet and look up: greatnonprofits.com and The National Leiomyosarcoma Foundation. Great web sites. Questions answered! FIVE STARS!
Setsuko Yamamoto
Kagoshima, Japan
I would like to give the National Leiomyosarcoma Foundation and Great Nonprofits.org a five star rating based on a close friend being diagnosed with Leiomyosarcoma and seeing his fears eliminated by solutions was a true blessing!
These organizations provide the true tools to understanding a very troubling form of cancer that very attention was paid in past years.
FINALLY PEOPLE WHO CARE AND SHARE!
I recently learned of the National Leiomayosarcoma Foundation and in a very short time, this organization has proven to be a valuable resource in learning more about this rare disease. I fully support their work.
I am a survivor of Leiomyosarcoma going on 21 years. Thanks so much for support from National Leiomyosarcoma Foundation. It was the support and fellowship of this group that gave me life and tools to live for the day. I truly believe that with people around us , we avail and overcome so many obstacles. My LMS in my chest began in August 1996 at my 36 th birthday party. Yes, Sloan Kettering and Dr Robert Ginzburg with two fellow surgeons. Great nurses and support from a well respected hospital. I reached out and at a Hug Fest gathering in Lancaster , Pa I became involved. Resection of tumor and new healthy lifestyle of juicing and health crazed mantra afforded a new life. I was 36 with afour month old when the surgeons removed a grapefruit sized tumor comprising, 1/3 right lung. right diaphragm, 3" esophagus. as well as ling of heart. If I do believe in divine intervention and great medical doctors. Thanks www.nlmsf.org for guidance. Support, fellowship and the grace of God. Vaya con Dios, Jim Matthews Laura Tara DJ Sawyer give me purpose.
The National Leiomyosarcoma Foundation continues its mission of helping patients all over the world. As a donor, I admire and continue to support their constant efforts and dedication on behalf of patients and their families, as well as support the research work for Leiomyosarcoma.
I am fortunate to personally know the leaders of this incredible foundation, Annie and Mitchell Achee, MD, and their passion, BIG hearts and determination to helping sarcoma patients is so inspiring! I strongly encourage everyone to donate financially or volunteer.
The NLMSF is one of the only resources readily available for patients suffering from leiomyosarcoma. Most doctors, even most oncologists, cannot provide the same resources in education for patients as the NLMSF. The NLMSF is a lifeline connecting patients in need with expert physicians specializing in the disease.
It is the dedication of the people behind the National Leiomyosarcoma Foundation that really sets it apart in terms of excellence. Thanks to their devotion to fighting the disease, more people are alive today because of them. I cannot recommend them enough.
I work with all kinds of cancer patients and their family members to help them get reliable information and appropriate medical care. Leiomyosarcoma is a rare form of cancer which behaves differently than other kinds of cancer. The National Leiomyosarcoma Foundation provides accurate information and guidance to help patients and caregivers find medical experts and the best care at every stage. Caring personal contact from the leadership of NLMSF helps isolated patients and caregivers to know they are not alone. Resources include the NLMSF website; regional patient education meetings with expert physicians and researchers; internet information exchanges via Smart Patients, the Association of Cancer Online Resources (ACOR), and Facebook; and funding for vital research. Patients and their families find a safe harbor at NLMSF during the hardest time of their lives.
I am a 15 year survivor of a very extratordinaray small sarcoma type cancer. For most people who are ever diagnosed with this type of cancer they will not be here after 5 years. the current focus of cancer research will not help us for years maybe not even decades after the most prevelate of cancer research finds a way to cure or even help the majority of cancer patients. We are the orphans of mainstream cancer research, treatment or of even notice. NLMSF is THE national orginanastion that that communicates our very existence.
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.
