(Click the Link Below To View)
2002 – present: The NLMSF Research Project Support Funding history: https://leiomyosarcoma.info/research-projects/
2020 Sarcoma PatientsEuro.Net partner with the NLMS in support of the International LMS Research Roundtable.subsequent
2019 The NLMSF launched the International Leiomyosarcoma Roundtable, now with 120 research members in global support. https://leiomyosarcoma.info/
July 2016: – Congress passed the Resolution: https://www.govtrack.us/congress/bills/114/sres545/text/ats
2016 – The NLMSF reached out for support from Congress for National Leiomyosarcoma Awareness Day – July15.
2015 – The NLMSF collaborate with several cancer / sarcoma working groups throughout the US and Canada to strengthen and amplify patient – family/caregiver resource support.
2012 – patient education programs began at sarcoma centers of excellence and the evolution of the Foundation has been remarkable.
2001 – Foundation founded by a Caregiver in honor of his wife to support and advocate for patients and fund research. Originally, a gathering place for peer-to-peer support, * (see details of the patients and families who came together in 2001)
Annual reports of Accountability in patient advocacy and research support to the LMS Patient/Family Community:
NLMSF Annual Report 2022 NLMSF Annual Report 2021 NLMSF Annual Report 2020 NLMSF Annual Report 2019 NLMSF Annual Report 2018
NLMSF Annual Report 2017 NLMSF Annual Report 2016 NLMSF Annual Report 2015
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.
Arun Singh, M.D.
Associate Professor Sarcoma Service Division of Hematology
“The National Leiomyosarcoma Foundation is an important organization that strives to gather a critical mass of patients, scientists, patient advocates and physicians to learn more about this rare disease. Within the NLMSF, the LMS Research Roundtable organizes cutting edge research in this area and strives to innovate the ways that this disease is treated.”
Janai Carr- Ascher, MD
Pathologist
Molecular Biology Medicine
UC Davis
Sacramento, CA
Nam Quoc Bui, MD
Sarcoma Medical Oncologist
Stanford Cancer Institute
Stanford University
Stanford, CA
Elizabeth Davis, MD
Sarcoma Medical Oncologist
Vanderbilt-Ingram Cancer Center, Nashville, TN
Mihaela Druta, MD
Sarcoma Medical Oncologist
Moffitt Cancer Center and Research Institute
Tampa, FL
Kenneth Cardona, MD FACS
Sarcoma Surgical Oncologist
Emory Winship Cancer Institute
Atlanta, GA
Kristen N. Ganjoo, MD
Sarcoma Medical Oncologist
Stanford Cancer Institute
Stanford University
Stanford, CA
Suzanne George, MD
Sarcoma Medical Oncologist
Dana-Farber Cancer Institute
Boston, MA
Rebecca Gladdy, MD, PhD
Sarcoma Surgical Oncologist
Princess Margaret Cancer Center
Toronto, Canada
Matthew Hemming, MD, PhD
Sarcoma Medical Oncologist
UMass Memorial Health
Worcester, MA
Evita Henderson-Jackson, MD
Pathologist
Moffitt Cancer Center and Research Institute
Tampa, FL
Matthew Ingham, MD, PhD
Sarcoma Medical Oncologist
Brian Kadera, MD
Surgical Oncologist
Ronald Reagan Med. Center
UCLA
Los Angeles, CA
Anush Kalbasi, MD
Radiation Oncologist
Stanford Cancer Institute
Stanford University
Stanford, CA
Aparna Kamat, MD
Gynecologic Surgical Oncologist Houston Methodist Hospital
Houston, TX
.
Alexander J. Lazar, MD, PhD
Sarcoma Pathologist
The University of Texas
MD Anderson Cancer Center
Houston, TX.
Sujana Movva, MD
Sarcoma Medical Oncologist
Memorial Sloan Kettering Cancer Center
New York, NY
Corrie Painter, PhD
Associate Director of Operations and Scientific Outreach at the Broad Institute. A trained cancer researcher with a Ph.D. in biochemistry, Corrie partners with advocacy groups and engages patients to carry out the COUNT ME IN PROJECT for Metastatic Breast Cancer Project, the Angiosarcoma Project, the Prostate Cancer Project, and the Leiomyosarcoma Project within COUNT ME IN.
Seth Pollack, MD
Sarcoma Medical Oncologist
Lurie Cancer Center
Northwestern University
Chicago, IL
Dale Shepard, MD
Sarcoma Medical Oncologist
Taussig Oncology
Cleveland Clinic
Cleveland, OH
Neeta Somaiah, MD
Sarcoma Medical Oncologist
MD Anderson Cancer Center
Houston, TX
Jonathan Trent, MD, PhD
Sarcoma Medical Oncologist
Sylvester Cancer Center
Miami, FL
Brian A. Van Tine, MD, PhD
Sarcoma Medical Oncologist
Sietman Cancer Center
Washington University
St. Louis, MO
William Tseng, MD
Sarcoma Surgical Oncologist
Keck Medicine of USC,
Los Angeles, CA
Scott Okuno, MD
Sarcoma Medical Oncologist
Mayo Clinic
Rochester, MN
Brittany Sciontis, MD
Sarcoma Medical Oncologist
Mayo Clinic
Rochester, MN
Elise Nassif-Haddad< MD, PhD
Sarcoma Medical Oncologist
MD Anderson Cancer Center
Houston, TX
Alessandra Maleddu, MD
Sarcoma Medical Oncologist
University of Colorado
Cancer Center
Aurora, CO
President and Community Education / Research Liaison
I am devoted to the mission and goals of the Foundation,
since its inception in 1999 – through the vision of Mr. Edmund Hoag.
My aim is to preserve his legacy – preserve the Foundation as he wanted it to be, by continuing all the focus that he had from the beginning – patient-centric programs and initiatives to promote support and advocacy within the LMS Community.
My dedication and commitment to this is unwavering – to faithfully serve the Champions of Hope – the patients; and promote collaborative relationships and partnerships with the Research Community –
the Heroes Among us.
An interview from Global Genes with the President of the National LMS Foundation:
NLMSF Medical Advisory / Patient Access/ International LMS Research Roundtable Executive Committee
I am a Diagnostic Radiologist who retired in 2021 after practicing for 40 years. I am also an LMS survivor, diagnosed in 2011. My undergraduate degree is from Johns Hopkins University and my MD from the University of Virginia. I did both my Internal Medicine Residency and my Radiology residency at Fitzsimons Army Medical Center in Aurora, Colorado. I have held many leadership positions in my radiology group at hospitals and the Denver Medical Society. .
I wish to “pay it forward” to the LMS Community by helping to educate patients and their families about LMS so that the patient can be their own best advocate and an active participant with their sarcoma medical care team during their treatment. I also like to stress to them the importance of being treated at a dedicated sarcoma center or at a minimum getting a second opinion regarding the best treatment for them at such a center.
NOTE: Both Dr. Achee and Annie are members of the following research organizations: Connective Tissue Oncology Society (CTOS); the American Society of Clinical Oncologists (ASCO); the American Association of Cancer Research (AACR) and the European Society of Medical Onoclogy (ESMO).
Neeta Somaiah, MD
Sarcoma Medical Oncologist
MD Anderson Cancer Center
Houston, TX
Elise Nassif-Haddad, MD, PhD
Sarcoma Medical Onclogist
MD Anderson Cancer Center
Houston, TX
NLMSF Community Outreach
I am a survivor of sarcoma for the past 13 years
I also have a FB group – Sarcoma (Cancer) Awareness to help others and
“pay it forward” and now as a Board Member of the NLMSF, I feel even more
empowered to be able to support patients and their families.
I have appreciated the NLMSF’s approach and professional
integrity in the work being done for support, education, and research
on behalf of the sarcoma community and I am happy to be a part.
I am still employed, and I am a grandfather of 2 granddaughters. I am also an amputee of my left leg because of sarcoma cancer.
” Hope is the only thing stronger than fear.” is my message to all.
NLMSF Community Outreach
NLMSF Treasurer
I was diagnosed with uterine leiomyosarcoma in 2015. I have undergone numerous surgeries and chemotherapies. Throughout this time, I have done all I can to maintain a positive attitude. This, along with my strong faith and an excellent team of doctors, has carried me through.
I enjoyed a 32-year career in Purchasing for various steel companies in Pittsburgh, PA. I love spending time with family and friends, cooking, reading, working on my house, spending time outdoors, yoga, walking and biking. I do a lot of volunteer work and do as much as possible to help others.
The NLMSF has been such a great resource for me, being Treasurer is the least I can do to show my appreciation.
Community Awareness Outreach Coordinator
I hail from New Jersey, and am a graduate in Economics from Seton Hall University. I am long time survivor, having been diagnosed in 1996 and treated at Memorial Sloan Kettering in NY. I was one of the original members of the National Leiomyosarcoma Foundation, having attend their first HugFest in Lancaster, PA.
I am blessed with a loving family and blessed to be affiliated with the NLMSF.
I believe in the goodness of my fellow board members and want to help the LMS Community through collaborative Foundation support and advocacy in
to honor the legacy of Mr. Edmund Hoag and his board members – carrying on
their original mission of supporting the LMS patients and their families.
My name is Christopher Hancock, owner of Corvus SEO
I am a former Machine Gunner in the Marine Corps and proud to have had the privilege to honorably serve the country I love.
I have been working with the NLMSF for the last 2 years, ever since my mother Shannon Shapiro met Annie Achee at a convention, as she is a survivor of LMS since 2018.
I am very pleased to serve as a Board Member for the NLMSF in her honor. My values and work ethic aligns with the mission and success of the NLMSF in assisting the LMS community. Their dedication, tenacity and can-do spirit is inspirational to me and I’m honored to be a part of it.
I am a Cancer Immunotherapy Coordinator for patients interested in going to Germany for Dendritic Cell Therapy treatment.
I am happy to be a part of the NLMSF Foundation, as I feel they are a special group to advocate for the LMS Community.
NLMSF Community Outreach
Social Media
Chandalyn Williams is a highly motivated and experienced executive professional, regarded for her ability to deliver outstanding results with the highest degree of expertise and professionalism. She holds a Bachelor of Arts degree in Business Administration and Communication Management from Jones International University, graduating Cum Laude; a Master of Business Administration from Texas Woman’s University and; is currently within one year of completing her Doctorate of Business Administration at Trident International University. Chandalyn has served as an inpatient volunteer with M. D. Anderson Cancer Center, advocated on public platforms, such as Rare Disease Day at the Texas State Capitol and led annual 5K Run/Walks for over nine years in support of Leiomyosarcoma (LMS) Cancer research.
“When my mother, Cynthia Solomon Holmes, was diagnosed on April 8, 2010 with Leiomyosarcoma (LMS) after visiting her doctor for a persistent cough, I was not prepared for how my world as I knew it would be turned upside down. Watching my mother fight this disease with the strength and vigor I knew to be her was an overwhelmingly painful experience. I felt physically helpless – but I knew how to pray. For her, my family and me. Following only a three-month battle with this dragon, my mother succumbed to the disease, passing away at the age of 52. I vowed to turn my personal tragedy into something that could be triumph for others who are faced with this disease through the creation of The Cynthia Solomon Holmes Foundation. I pray that through my efforts, individuals are inspired to support those battling this disease and in the daily fight for their right to live!” ~ Chandalyn Williams
Jacque has over 25 years’ experience across the entire spectrum of Marketing and Digital: front-end development, brand/marketing strategy, direct response marketing (including mail, email, mobile, social), project management (waterfall & agile), UX/UI and content strategy. She has worked across a broad spectrum of organizations in addition to AHA, including FedEx, The US Department of Treasury, Bahamas Ministry of Tourism, Golds Gym, Hyatt Hotels and multiple Consumer Package Good Brands.
Jacque holds a degree in Fashion and Interior Design and is a passionate creative who uses her design talents to transform organizations and brand experiences. She is very enthused and inspired to work with the National Leiomyosarcoma Foundation – as a Community Awareness Ambassador to advance the mission, vision, and purpose of the NLMSF.
My name is Marlana Stoddard Hayes and I am a 6 year survivor of uterine LMS, presenting as STUMP in 2011.
Formerly, I have been a Professor of Art for 35 years with my last position as faculty at Marylhurst University in Oregon. In 2015, my diagnosis called me to step away from all teaching in order to focus on my health. In my current professional life I am represented by A.I.R. Gallery in NYC as a National Member and have a listing in Who’s Who of America. I am happy to help support the NLMSF foundation as a Board Member, as well as with donations of cards and pillow making in support of this cancer journey on behalf of cancer patients and their families. We are also parents of an amazing Chinese girl, now 18!
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