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National Leiomyosarcoma Foundation

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Nonprofit Overview

Causes: Cancer, Cancer Research, Health, Philanthropy, Private Grantmaking Foundations

Mission: Our mission is to provide leadership in supporting research of leiomyosarcoma, improving treatment outcomes of those affected by this disease as well as fostering awareness in the medical community and general public.

Programs: Research grant to standford university

Community Stories

30 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

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

1

General Member of the Public

Rating: 5

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!

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

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.

Randa L.

Volunteer

Rating: 5

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.

Donor

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Robin_Martinez

Professional with expertise in this field

Rating: 5

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.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Donor

Rating: 5

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.

Professional with expertise in this field

Rating: 5

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.

Board Member

Rating: 5

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.

Donor

Rating: 5

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.

Donor

Rating: 5

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.

1 NLMSF treasurer

Board Member

Rating: 5

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!

2

Donor

Rating: 5

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.

3

Donor

Rating: 5

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.