LMSdr has been a tremendous source of information, support, guidance, and realistic hope since I was diagnosed with this rare and aggressive cancer about a year ago. It hosts a wonderful worldwide FB page for people and their loved ones who have this diagnosis. It is well monitored and a tremendous source of information and support. LMSdr does everything possible to help people find a cure for this rare cancer, including identifying scientific research projects for financial support, helping people host fundraisers, organizing a tissue bank and blood samples for research purposes, hosting seminars, providing recordings of past seminars, the list goes on and on. I have contributed greatly to LMSdr, and have encouraged friends, colleagues, and relatives to do likewise. A tremendous percentage of what LMSdr collects goes directly to LMS research. Their expenses are low as the organization is completely volunteer-run. I simply cannot praise LMSdr enough!
I was diagnosed with a rare cancer called leiomyosarcoma (shortened to "LMSarcoma") in 2004. The diagnosis was like being hit by a truck and shattered into a million pieces. As I underwent a series of painful surgeries and spent 9 years taking a medicine to prevent a recurrence, I found LMSarcoma Direct Research Foundation (lmsdr.org). Started by a person with the same disease, Sharon Anderson, the group has been a constant source of knowledge, support, and networking. They also provide grants to researchers. I knew many people with the disease because I was one of the founders of a support group in the Washington, DC, area, but LMSdr.org allowed me to meet--and become friends with--people from around the world. I am not expecting to die any time soon, but I have designated LMSdr.org as the recipient of any donations when the time comes. For now, I know I can find the latest news on treatments, round-the-clock support, and info on other people's experiences. Leiomyosarcoma is a very complex disease that can be difficult to treat, so knowledge is crucial to survival. Armed with this knowledge and a great doctor, I am a 13-year survivor--and I've seen all three of my kids grow up!
LMSdr has played an important role in my survivor-ship. The Facebook group and the retreats have contributed much knowledge useful in my care. The personal connections have been uplifting. This rare, orphan disease has benefited from the passion and compassion of the organization. Working, not wishing!
I have been involved with LMSdr as a patient and community volunteer. The support and information received through LMSdr has been invaluable. Immediate support for newly diagnosed people who are scared by reading the dismal life expectations of this disease. They find us and can reap the collective knowledge of patients all over the world. Advocating for yourself is hard period and then you add a rare diagnosis like LMS and even the strongest person can crumble. LMSdr is there 24/7 with our Facebook group to be a support and the research focus of the charity helps us connect directly to researchers interested in LMS. I am still alive at 7 years and credit LMSdr for helping with that.
This is a great place to find info. Other treament option. Thanks for the info and great people.
Nothing in my career in medicine prepared me for the devastating diagnosis of Uterine Leiomyosarcoma. When cancer suddenly invaded my life I was overwhelmed with shock and despair. The rarity of the disease was terrifying with seemingly few resources to turn too. LMSdr has been invaluable too me and my loved ones. I have found support, education, and comfort in knowing I am not alone. I cannot thank this organization enough!
Lmsarcoma Direct Research Foundation became the anchor during the tumultuous period when I first learned of my diagnosis. There were so many questions, and the web site as well as the facebook page provided not only the much needed answers but the human connection for emotional support that helped to keep me grounded and sane and to know that I was not alone. With such a rare disease as LMS at times you feel very alone, but it is always good to know that through the FB page there is support only one click away.
What can I say about an organization that gives hope and comfort to those diagnosed with a non-curable cancer? Best way to describe LMSarcoma Direct Research Foundation is that it's a safe haven in the storm of our lives.
It's hard to describe in words the way the LMSDR has helped our family and families all over the world. It's a safe place to talk about your disease when everyone else keeps their hands over the ears. It's a place to share with other patients on the latest treatments, the best doctors for the fight against Leiomyosarcoma and it's a wealth of information when dealing with the very nasty side effects that accompany the toxic chemo drugs that are necessary for the fight.
There is very little awareness for the deadly Sarcoma cancers, but LMSDR is working every day to try and change that. Money will and has made a difference in the research for fighting this disease. LMSDR has raised many thousands of dollars that go directly to the few research centers that are working for the cure. All volunteer, all by runs, t-shirt sales, bracelets and donations in memory of those who have passed.
Everyone involved works for the cure, a cure that surely will be coming soon for those of us that are fighting this dragon of a disease.
Finding this group took me from feeling alone to experiencing a great, supportive community of people with the same experiences, fears and triumphs I have had in battling LMS. Their Website is easily accessible, and navigable and their FB support group is active and encouraging -- and full of knowledgeable, empowered survivors. The organization is 100% volunteer, from the director to the FB moderators to the board and advisory groups. And because of their cooperation with other LMS/sarcoma organizations and with medical researchers. you can be assured donations are wisely used for research.
I will shout it from the Rooftops! LMSdr is a lifesaver! Alone, terrified and seeking answers for rare aggressive Leiomyosarcoma? This group provides research for our cancer, shares experiences and uplifts other patients that may have never met another LMS patient. US population is 319 million; the estimated numbers of LMS survivors/thrivers patients is about 3,500 in the USA. We are a rare group with hope in our hearts that more research will be possible and treatments found as a result of dedicated research funds for LMS due to LMSdr. I speak from the heart; I know....I am a Stage 4 patient surviving for 5.5 years now with a heavy tumor load. Without this group, I would be lost, less informed and less hopeful for my future.
Alone and in shock no more! The LMSDr community has uplifted my sagging spirits, provided valuable education to me and 1400+ other LMS patients on latest trials and procedures and allowed me to share my treatment experiences so that others may learn from me as well. Sharing and caring, together we are stronger because of LMSdr. Patient and volunteer.
This site is invaluable to those with Leiomyosarcoma. It is full of information and hope. Anyone diagnosed with a rare disease finds themselves alone with miserable statistics. A site like this is a lifesaver.
I was diagnosed with leiomyosarcoma. I couldn't pronounce the word let alone know what it was. My oncologist kept looking down at the report & back to me with terrified eyes. I heard RARE, AGGRESSIVE, FAST GROWING. The Internet was terrifying. Statistics were low and there seemed not much hope. But then I found an online group that offered support, encouragement, recommendations, hope...a light in a dismal place. LMSdr has been my rock. This rare cancer gets very little funding or recognition like other well known cancers. All donations to LMSdr go directly to research on our own cancer to help find better treatments and eventually a cure. The logo is "Working not Wishing".
As a survivor of a rare cancer I feel so much a part of my doing well was due to Lmsdr. The word rare immediately inspires fear. Cancer makes it horror. This group has given hope and real help to so many. It is a life line when you know someone out there understands and wants to help. You are not alone.
Lmsdr is a haven in a storm. The information shared by individuals is more powerful than any source. Collective knowledge and experience. Factual medical information. Love and caring support. You can't ask for more.
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 smile.Amazon.com a donation is made to LMSdr.
EXTREMELY helpful. My family so appreciates the hope this group has given and the information to help with questions to ask doctors.
Talk about good information! This foundation helps and shares with those of us who have unluckily needed the Support! The group is on top of the newest treatments out there and ready to share.
I’m a leiomyosarcoma caregiver and a donor to LMSDR. Leiomyosarcoma is a rare cancer that until not too long ago I’d never heard of. This disease needs more research but its not that big of a “market”. LMSDR channels donations directly to researchers, and it provides a place for us to share experiences and compare notes. Its a very deserving cause. Thanks LMSDR.
Without LMSdr - I can't fathom what my life would be like. The information and support given is unparalleled.I was given old statistics and antiquated answers from local oncology team. LMSdr put me in touch with others who gave me good information/real information- referrals - and hope.
LMSDR is a lifesaver! I find information and support at my fingertips. I can go through their website, facebook group, or monthly e-letter to keep up with the latest research and treatments. The facebook group and retreats are a great way to meet other survivors and get support. It's easy to donate, since they are also signed up with groups such as Igive and amazon smiles.
The information and support is so helpful. In more ways than one, LMSdr has been a life saver.
LMSdr has been my lifeline to the community of people living with leiomyosarcoma, a rare and aggressive cancer. LMSdr's first priority is fundraising to support research into this rare cancer. But its other functions have personally benefitted me the most. LMSdr sponsors a very active Facebook page, where those of us suffering from this rare disease can come to know and support each other. It hosts an informational website and newsletter to keep us current on the latest research & developments. And it sponsors retreats!
I'm so lucky that I found this group. It's very hard to find information and support for a disease that is very rare. I get fantastic information and constant updates on any trial available as well as advice, support and valuable information about treatments that my fellow LMSdr friends are trying. I get real life information on side effects and "tricks" to avoid them. We mourn losses together and we celebrate victories . I am very lucky to be a part of this group.