Our Mission & Vision – Our Support Programs and Services – Who We Are as Foundation Volunteers
OUR MISSION / VISION = OUR PASSION
Our mission is to advance research in order to accelerate treatment options and offer supportive resource assistance to patients and caregivers throughout the diagnosis and treatment journey.
The National Leiomyosarcoma Foundation is comprised of volunteer Board members committed to the foundation’s vision.
The Board members serving the Foundation are here for YOU – for patients, families, and caregivers. They are passionate about answering your questions and being available to respond to requested assistance. They represent and advocate for you.
The Board members have been touched by LMS in some way, whether as a survivor/thriver or as a family member/caregiver.
Meet our Board
President and Community Education / Research Liaison
As the President of the Foundation, I am devoted to the work of this Foundation,carried out through the lens of a sarcoma coalition network approach/platform.
The “mission that matters” with the Foundation is a strong focus on patient advocacy through education, research funding support, and reaching out to other complimentary organizations to amplify patient/family/caregiver resource assistance.
My coalition-related efforts offer increased awareness of the Foundation’s focus on behalf of patients, families, and caregivers. As a caregiver myself, I am passionate about the well being of the LMS community being served by this Foundation through the collaborative/partnering perspective.
I am honored and totally committed to helping patients and their families through the Foundation’s mission and purpose. Our place in the sarcoma research community landscape is growing, respected, and encouraged by the researchers who are part of who we are – our everyday Heroes, along with patients – our Champions of Hope.
An interview from Global Genes with the President of the National LMS Foundation:
Mitch D. Achee, M.D.
NLMSF Medical Advisory / Patient Access/ International LMS Research Roundtable Executive Committee
Mitch is a leiomyosarcoma survivor, diagnosed in 2011. He is a Board Certified Diagnostic Radiologist practicing for over 30 years in Denver, Colorado.
He received a B.A. from Johns Hopkins University and his M.D. from the University of Virginia. He completed his internship in Internal Medicine and his residency in Diagnostic Radiology at Fitzsimons Army Medical Center in Colorado.
He has served on both Active Duty and in the Reserves in the Army. Mitch has served in various leadership roles in his practice, at hospitals and for the Denver Medical Society.
Mitch has developed a strong interest in cancer patient support and advocacy and sarcoma research.
He is a member of the Connective Tissue Oncology Society (CTOS), the American Society of Clinical Oncologists (ASCO), the American Association of Cancer Research (AACR), the Colorado Radiological Society, the Colorado Medical Society and the Denver Medical Society.
Community Outreach, Special Projects
Having lived in Cincinnati, Ohio for 44 years, I consider myself a Cincinnatian even though I was raised and educated near Detroit, Michigan. My background was in primary and intermediate education. After 30 years of teaching primary and intermediate grades, I moved on to a supervisory student teacher position for the Miami of Ohio University.
Not unlike others, when my daughter, Annemarie, at age 46 was diagnosed with peritoneal Leiomyosarcoma (LMS), my world changed its course. As a result, my passion was totally focused on being an active member of the National Leiomyosarcoma Foundation (NLMSF). My tenacity to investigate, rise to the challenge to fight this disease, through research and awareness, let my husband John and I to actively join the Foundation in 2011. In 2012, I became recording secretary, for two years and now the membership chairperson.
My husband, John, vice-president since 2013 of the NLMSF, joined me, as did close friends, to organize/coordinate the 2-5K runs in Cincinnati. I held numerous fundraisers from home parties to “wine and dine” events, to Shop for Cause with Macy’s department store.
Fortunately, our daughter is in remission. It warms my heart to meet other survivors who may still be battling the disease and leave me saddened when I hear of the LMS angels we lose. Rather than concentrate on me, I would like to concentrate on you and them.
My dream is to see the NLMSF increase its following/membership, as well as fundraising efforts through regions with others who agree with our very necessary cause. Thank you to those who have joined us, and to you who have not, please consider it.
“Together we can… Reach for the Cure.”
LMS Community Awareness Ambassador
I am a Jersey boy since birth, it may not be a rite of passage to some but, it does define my nature. I was surprised around my 36th birthday when good doctor Ginsburg told me I had Leiomyosarcoma.
I swear it was a dream after the smoke cleared I knew I should get healthy. Time went into low gear. While I delved into healthy eating upon reading A Cancer Battle Plan. Well, I became a juicer with vegetarian new found heart. Could have been the Nun who prayed with me before surgery.
Laura my wife bought Vita Mixer, juicers, Organic everything sympathetically mediating on this belief I got cancer from some contact with food, environment , or contact. I worked in pharmaceutical plants. Could my exposure to radiation of perhaps childhood want to be golf addict since 12. Maybe the pesticides I was exposed to in some form or another.
Laura my wife have been blessed with three children Tara Lynne, Derek, and Sawyer. I have a degree in Economics from Seton Hall University. I traveled the country and studied in Spain one summer. Education and understanding this disease became my second life. I am an assistant scoutmaster with Troop 116 in NJ.
After my recovery at Sloan Kettering in August of 1996 , I became a student. I found myself devouring anything and connecting the dots.
Not being a Doctor or a pathologist I understood the rudiments of LMS. After the first hug fest in Lancaster, Pa. I was charged with the belief we will survive.
Having a loving family and support of this community has uplifted my spirits. Slaying the dragon is a daily calling to many in our world.
Vaya con Dios .
FOUNDATION COMMUNITY AMBASSADORS:
Rachel B. Texas Olga L. S. Hawaii Lyndsey F. New Jersey Lynn F. Pennsylvania Jason K. Cincinnati. Eagle New York Ed. T. Canada Randa L. Maryland Wendy M. Pennsylvania Sam. F. Florida
. . . just to name a few throughout the country
History and Patient Focus
The NLMSF’s mission is to do all we can to meet the needs of Patients, Families, and Caregivers. We have been on the front line of research collaboration since 2002; funding support of well vetted LMS specific research projects. The Foundation has developed numerous programs to provide resources to the LMS community and invaluable partnerships with those researching this rare disease.
- MULTIPLE ANNUAL LMS EDUCATIONAL SYMPOSIAat major sarcoma centers throughout the USA and Canada.
- MEDICAL JOURNAL/APPOINTMENT ORGANIZERScomplimentary to LMS patients.
- EDUCATIONAL WEBINARSin partnership with other organizations for patients and caregivers.
- Our main NLMSF web site provides a wealth of information about LMS and how to navigate diagnosis and treatment.
- The NLMSF Research site provides information on the latest research, clinical trials, data collection programs, and more.
- NLMSF Life Change focuses on the emotional and support side of the journey as well as life after treatment.
- NLMSF NEWS TRACKERis a weekly newsletter providing tips, research updates, notice of events, and other LMS research news. [I linked this to archive, but should it to go interactive page? And with all this header changing we’ve lost a place to subscribe.]
- Patient – Caregiver Advocacy Network [Roundtable] – A Foundation initiative to bring the voices of patients and caregivers together to share experiences in diagnosis and treatment to help improve standard of care through recommendation to oncology care team consideration, and the LMS Research Roundtable enhancement of the NCCN Guidelines for standard of care, to specifically address LMS patient needs and issues. Patient/caregiver input will also be shared with the NCI MyPart Network initiative collecting natural history data.
- LMS LIVE CONNECT is a monthly conference call for patients, family members, and caregivers to share their experience and provide support.
- LMS SUPPORT HELPLINE 24/7 HELPLINE: 303 808-3437
- CONNECT WITH A CLINICIAN program provides an opportunity to connect with research oncologists to ask general questions.
- SIDE EFFECTS EQ is a free tool that helps you manage cancer treatment side effects and learn from experts–medical professionals, and fellow patients.