National Leiomyosarcoma Foundation

The National Leiomyosarcoma Foundation (NLMSF) serves a far greater purpose that some may know. For those of us who have witnessed a loved one battling LMS, we look for support from someone who knows and understands what we're experiencing. The NLMSF provides the support and advocacy needed for LMS patients and families. I find comfort in knowing that there is an organization who has a sincere heart for finding a cure for this disease. The organization is full of passionate, genuine and sincere individuals with serving hearts. This fight is not for the faint at heart and I sincerely appreciate them for enduring.

My sister’s friend Andrea, who was with my younger sister during her second crisis when the LMS metastasized from her uterus to her lung after five years, found this resource for us, her sisters. It has been important in immeasurable ways. Our moderator, Annie Achee, invited and responded to our phone calls at any hour of the day or night, always welcoming, always reassuring. At our first zoom meeting, my sister learned of a diagnostic technique that would dramatically alter her treatment regimen. Even before the news that, we hope, changed her outcomes, my sister felt buttressed by the supportive environment of fellow sufferers, fellow survivors, and gained reassurance along with new hope.

As our moderator, Annie solicits eminent researchers and practitioners to educate us on LMS and to respond to whatever questions we may have. That enables us to comprehend the latest research information and to share it with our extensive family, all of whom care deeply about our sister’s survival. During meetings, Annie solicits questions and responses from all attendees, and extends her welcoming warmth to all. The forum is a source of hope, community, and essential information. I am grateful to participate and for the opportunity-to learn.
Thank you, Annie, and our fellow participants and contributors.
Best,
Jeanne McLaughlin

I am continually amazed by the National Leiomysarcoma Foundation. Annie Achee, as president of NLMSF, has done a tremendous job building the organization. I have watched Annie in action over the years with both awe and admiration for what she has accomplished. NLMSF has both well deserved national and international stature in the sarcoma research community. Mitch Achee, MD, as NLMSF Medical Advisory chair, is a superb clinician with wide-ranging knowledge.

Mitch, Annie, and their board have a passion for improving sarcoma patient outcomes and providing important resources for caregivers and care partners. The sarcoma experts that they have assembled for the NLMSF's ongoing work and conferences are impressive. The enduring respect that Annie and Mitch have garnered from those experts says it all.

Bravo to a great sarcoma organization, and please keep up the excellent work in so many directions. For complex LMS cases, NLMSF should be your first call. I encourage sarcoma patients to support the NLMSF's research agenda as well as the foundation's mission and programs.

This organization is the best! They have put so much work and passion into helping fight this disease that hits so close to home to my family.

National Leiomyosarcoma Foundation is so very supportive. Finding trials that people affected by this cancer may need. Seminars available and positive guides and thoughts. Contacting others that have survived to encourage newly diagnosed people. Very loving!

I was diagnosed with LMS several years ago. This disease is so rare that I felt alone and that the setbacks and challenges I faced were only mine. When I found NLMSF, a door opened. I found not only a community who shared so much of my experience, but an organization dedicated to the research, treatment, and cure of this insidious rare cancer. There is a personal touch from the leadership of NLMSF you don't often see in large charities and it means a great deal to our community. They are also sparking vital collaboration in the research world.

Excellent organization. The staff work extremely hard all hours of the day dealing with patients who were recently diagnosed. In many cases, it is their individual experience with the disease that has help many cope with their own diagnosis. Mitch Achee, MD and his wife Annie Achee have worked tirelessly to help others. They both have taken an active role in the research aspects of the disease by organizing specific research meetings to bring all the best research talent to the table. The have devoted countless hours of their individual time and talent, to insure that the donations generated our going to the right research group to further the needed research in this area. It is a great pleasure to personally support their endeavors.

NLMSF is a valuable resource for those newly diagnosed, those needing information on treatment options, as well as those who are survivors.

The National Leiomyosarcoma Foundation has brought hope to so many families. The volunteers of this organization are dedicated to spreading awareness and helping with clinical trials.

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 LMS foundation has been stupendous. I couldn't be more grateful!

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.

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.

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.

This is an organization that puts all its efforts in ensuring Leiomyosarcoma patients get the resources they need and promotes research efforts towards curing this extremely rare cancer.

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.

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.

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.

I lost my 43 year old brother to Leiomyosarcoma last year. When he was diagnosed six years ago we turned to the National Leiomyosarcoma Foundation for information. They provided that and so much more: COMPASSION and a group of volunteers who were always there to help through the tough times of this rare disease. NMLSF provides outreach to those families affected by NMLSF as well as money to those doctors and researchers who work vigorously to find a cure for this insidious cancer that does not get the resources and funding needed to find a cure. God Bless all of the wonderful volunteers of this organization and everyone affected by this cancer.

NLMSF has worked tirelessly to create a foundation that personally reaches patients in need of a community that is there for them. NLMSF is always available through phone calls or the internet to personally assist patients with their treatment plans or to just have someone to talk to. Recently a chat room was set up for patients to exchange thoughts and feelings with each other which was very successful.

NLMSF is truly dedicated and committed to finding innovative ways to find funding for a cure for this truly underfunded rare form of cancer. They have also been able to bring top scientists, clinicians and researchers onboard to interact with each other as well as the sarcoma community at various conferences around the country.

This foundation does a great job raising money for a disease that gets very little recognition and I am proud to be a part of it.

National Leiomyosarcoma Foundation is working hard to help patients and their families get the best treatment for leiomyosarcoma. We lost my mother-in-law to this type of cancer, and unfortunately many people are not familiar with it. The work done by National Leiomyosarcoma Foundation is so important and can help save lives.

I have a friend who lost his mother to this dreaded disease. Without dedication and fundraising, the research necarsary to help find treatment and a cure for this rare form of cancer is stalled leaving patients and families waiting. Through this nonprofit fundraising foundation you can help advance hope and real solutions to find the cause, treatment and possible cure for this devastating form of cancer.

NLMSF is my first call whenever I have any sarcoma patient cases to discuss. This is an absolutely wonderful sarcoma foundation that reaches out personally to patients via personal phone calls, helping sarcoma patients navigate their treatment plans. NLMSF has impressive leadership in Annie Achee and Mitchell Achee, MD who have a passion for helping sarcoma patients access the top resources to battle this very challenging and terribly under-served disease.

NLMSF makes a real difference in the funding of sarcoma research. They revere their researchers, and they understand the importance of collaboration throughout the US and abroad.

Having seen Annie Achee and Dr. Mitchell Achee in action at major cancer conferences, I marvel at how adept they both are at interacting with clinicians, scientists, and the patient community. They, and members of their board, are intent on building a major foundation. And they are already major in terms of impact! Everyone needs to financially support this unique sarcoma charity that truly cares about transparency, accountability, and responsive patient services. The NLMSF booth at the recent ASCO Annual Meeting in Chicago was one of the most active booths of all patient organizations. Dr. Achee and Annie work tirelessly for sarcoma patients and researchers. This organization deserves massive public support.

The National Leiomyosarcoma Foundation is dedicated to raising funds for this rare disease. The volunteers in charge are so compassionate and unrelenting on finding a cure. We have raised money every year for the past 4 years for NLMSF as this disease has touched us personally. A dear friend of ours mother passed away when this little girl was only 3 years old. My daughter and her raised money by Trick or Treating for donations instead of candy! It was a great experience for them, one they will never forget.

Leiomyosarcoma is such a rare disease that without organizations like the NLMSF, many patients would be without any form of information on how to deal with the disease without it. Most doctors are not well versed on this form of cancer and finding doctors who are experts without sources like the NLMSF is exceedingly difficult.

But ultimately the information is secondary compared to the human part of the equation. The people who run the National Leiomyosarcoma Foundation are dedicated and tireless in their service to people in need of the support and resources they provide. I cannot recommend them enough.

Patients and their families search desperately for reliable information and proper treatment for LMS, a rare and often life-threatening cancer. The National Leiomyosarcoma Foundation provides accurate information at every stage of the journey. Resources include the NLMSF website, patient education meetings with expert physicians and researchers, internet forums like ACOR and Smart Patients, Facebook, and most important of all, caring personal contact. NLMSF promotes and funds vital research. It is a warm, superbly informed, active and involved organization. During the hardest time of their lives, patients and their families find a safe harbor at NLMSF.