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:
Arun Singh, M.D.
Associate Professor Sarcoma Service Division of Hematology-Oncology, U.C.L.A.
“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.”
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.
Janai Carr- Ascher, MD
Assistant Professor / Carr-Ascher Lab
Specialty, Molecular Biology Medicine
UC Davis, Sacramento, CA
Dr Nam Quoc Bui
is a Clinical Assistant Professor of Medicine at the Stanford Cancer Institute and a specialist in the
Sarcoma and Developmental Therapeutics programs
Elizabeth Davis, MD
Assistant Professor of Medicine Medical Director, Clinical Trials Office Vanderbilt- Ingram Cancer Center, Nashville, TN with research interest in improving the medical management of sarcoma patients through the creation of novel treatment regimens and early phase clinical trials.
Mihaela Druta, MD
Specialty: Medical Oncology
Sub Specialty: Medical Oncology, Hematology
Moffitt Cancer Center and Research Institute, Tampa, FL
Kenneth Cardona, MD FACS
Kristen N. Ganjoo, MD
Associate Professor of Medicine (Oncology),
Associate Professor – University Medical Line,
Medicine – Oncology / Research
Member, Stanford Cancer Institute
Suzanne George, MD
Director of Clinical Research, Sarcoma Center
Associate Professor of Medicine, Harvard Medical School
Rebecca Gladdy, MD, PhD
Surgeon Scientist and
Associate Professor at the University of Toronto,
Matthew Hemming, MD, PhD
Medical oncologist and physician scientist focused
on sarcoma at Dana-Farber Cancer Institute, Massachusetts,
and Harvard Medical School
Evita Henderson-Jackson, MD
Anatomic Pathology & Clinical Pathology Moffitt Cancer Center, Tampa, FL
Cancer Focus: Osteosarcoma, Sarcoma Dr. Henderson-Jackson is an Assistant Member in the Department of Anatomic Pathology at Moffitt Cancer Center. She completed her Bachelor’s degree at the University of South Carolina. She received her Doctor of Medicine at the Medical University of South Carolina in Charleston. She is a board certified pathologist in Anatomic/Clinical Pathology and Cytopathology who works with a wonderful team of highly trained expert pathologists and clinicians at Moffitt Cancer Center, the only NCI Comprehensive Cancer Center.
Matthew Ingham, Md, PhD
Assistant Professor of Medicine in the Division of Hematology and Oncology at
New York Presbyterian Hospital/Columbia University Medical Center.
Herbert Irving Comprehensive Cancer Center , NY
Brian Kadera, MD
Surgery, Complex General Surgical Oncology Surgery, Surgical Oncology, Ronald Reagan Med. Center
Anush Kalbasi, MD
Radiation Oncologist UCLA
Aparna Kamat, MD
Director of the Division of Gynecologic Oncology for Houston Methodist Hospital,
and is currently the section leader for the Gynecologic Oncology Clinic.
Alexander J. Lazar, MD, PhD
Professor, Department of Pathology, Division of Pathology/Lab Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX. Director, Sarcoma and Melanoma Clinical Genomics Program, The University of Texas MD Anderson Cancer Center, Houston, TX. Director, Selective (Soft Tissue) Pathology Fellowship Training Program, Department of Pathology, The University of Texas MD Anderson Cancer Center, Houston, TX.
Sujana Movva, MD
Sarcoma Research Oncologist
Memorial Sloan Kettering, 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
Director of the Sarcoma Program, Lurie Cancer Center
Professor of Cancer Biology
Associate Professor, Department of Medicine (Hematology and Oncology) Northwestern University Feinberg School of Medicine
Dale Shepard, MD
Cleveland, OH | OncologyDale Randall Shepard, MD, PhD Oncology • Cleveland, OH Gastrointestinal Cancer,
and Geriatric Medicine; Co Director Taussig Oncology
Neeta Somaiah MD
Associate Professor & Deputy Chair, Sarcoma Medical Oncology, MD Anderson Cancer Center, Houston, TX
Jonathan Trent, MD, PhD
Associate Director for Clinical Research
Sylvester Cancer Center – Miami, FL
Brian A. Van Tine, MD, PhD
Assistant Professor of Medicine,
Sarcoma Program Director, Washington University, St. Louis, MO
William Tseng, MD
Dr. Tseng is a surgical oncologist at Keck Medicine of USC,
who specializes in soft tissue sarcoma. He is part of the multidisciplinary
USC Sarcoma program Los Angeles, CA
Dr. Breelyn Wilky
Director of Sarcoma Medical Oncology
Deputy Associate Director for Clinical Research
CU Medical Center – University of Colorado Health Sciences
Dr. Elise Nassif, MD, PH D – MD Anderson Cancer Center
Elise Nassif is a post-doctoral fellow at MD Anderson Cancer Center. She received her Medical Degree in 2014 and her medical oncology specialty in 2020 from Paris University (France). She has a Master of Science in Immunology, which she completed at Paris University in 2019. She is currently leading a translational research project at MDACC under the mentorship of Dr Roland, Dr Keung and Dr Wargo regarding biomarkers of response to immunotherapy in the neoadjuvant setting across cancer types, with a particular focus on soft-tissue sarcomas. Her work at MDACC will be further pursued in France as part of her PhD under the co-direction of Pr Jean-Yves Blay and Pr Wolf-Hervé Fridman.
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.
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 Board Certified Diagnostic Radiologist, practicing in Colorado for over 30 yeas 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 was on active duty in the Army, in my internship and residency at Fitzsimons Army Medical Center in Aurora, Colorado, having also served in a leadership capacity for the Denver Medical Society; Also, a member of the Colorado Radiological Society and the Colorado Medical Society.
I wish to “pay it forward” to the LMS Community through assisting in answer general questions about the disease and explaining imaging results to help have a good understanding of their case, and be able to ask good the right questions of their care team as a result.
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).
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
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.
NLMSF Community Outreach
Survivor of UPS sarcoma since 2013, and my wife is also an Ovarian cancer survivor (2018). We are both in NED
status, and volunteer at MD Anderson to support patients.
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.
Board Member Emeritus
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.
Husband of Danka Vidgen, 2003/ULMS and retired bio-statistician from Toronto’s St Michael’s Hospital and University of Toronto with about 60 publications listed at PubMed repository. Father of son Anton. Ed is retired permanently in Thailand after having lived for 7 years in Mexico. Wants to be a Champion of hope for the NLMSF’s mission and goals.
NLMSF Community Outreach
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
A cancer survivor, patient advocate/peer mentor, speaker and author of The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer, Ms. Hayes is dedicated to supporting patients through the emotional experience of cancer. She founded TheBigOrdeal.com, a resource for patients and caregivers coping with cancer emotions, and speaks passionately on the topic to patients and their loving caregivers through cancer support organizations everywhere. She serves as a volunteer peer mentor in the Woman-to-Woman program at Mount Sinai Hospital in New York, and in Montefiore Medical Center’s BOLD Buddy program in the Bronx. She sits on the Board of Directors of Moving for Life and Global Focus on Cancer. Previously, she was President of Hayes Strategies for 25 years, where she consulted to clients on new business development, business strategy and marketing, and in 2011 went to work full time for one of her clients, Montefiore Medical Center in New York. Based on her expertise, Ms. Hayes has created and taught a number of executive training workshops and seminars, and served as adjunct professor at New York University Sloan School of Business. A former Commissioner with the New York City Commission on Women’s Issues under Mayor Mike Bloomberg, Ms. Hayes holds an MBA from Harvard Business School and a BA from Wellesley College.
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!
I graduated from Temple University with a bachelor in Social Work. BSW and a Masters degree in Education MEd . I worked as a social worker with older adults at In home support services and senior centers.
I was diagnosed and treated for LMS last year at the beginning of the COVID 19 pandemic. I am currently in remission or I like to say healed.
I was looking for a grant to pay for my remaining medical bills. I did not find any financial assistance, but I found a wealth of knowledge instead. My cancer center social worker gave me a list of foundations that might assist financially. I made a few calls and one of the organizations told me about NLMSF for patient support.
I did not receive financial assistance, but a wealth of knowledge and support about the LMS treatment research and resources through the NLMSF – a very patient-support oriented, caring foundation. Knowledge and support is priceless in a challenging time.
I am pleased to be a Board Member of the NLMSF to help others as I was helped by this organization of caring, dedicated volunteers.
After graduating from the University of Colorado in 1979 with a B.A. in Psychology, I have lived in the mountains of Colorado. In 1993, my family and I moved to the community of Steamboat Springs. Living an active lifestyle has always been important to me; skiing and hiking are my passions. Since the 1980s, I have worked in the fitness field, most recently, instructing Pilates.
My world changed in the fall of 2021 when I was diagnosed with retroperitoneal leiomyosarcoma after experiencing “unexplained weight loss.” My husband, a Vietnam Veteran, died of pancreatic cancer at the young age of 42 when our three children were just eight years of age and younger. Thus, when I read the words “suspicious for leiomyosarcoma” on my endoscopic biopsy report, my heart sunk. Immediately, I was filled with fear as well as deep sadness for my three children, now in their 30s. How could we go through this cancer journey again?
In my search for a “cure,” I reached out to my close friend, Dr. Nancy Bartlett, at Washington University in St. Louis. She immediately put me in contact with her colleagues, Dr. Brian Van Tine and Dr. William Hawkins, at the Siteman Cancer Center at Barnes-Jewish Hospital. In November 2021, Dr. Hawkins successfully resected the Grade 2 tumor from my ovarian vein. I am forever grateful to the team of doctors, nurses, and staff at Barnes-Jewish Hospital. Due to the high rate of recurrence of these tumors, I will be returning to St. Louis periodically for CT scans.
As I was doing research on the Internet for Leiomyosarcoma, I came across the NLMSF website. The resources it provides to patients and their caregivers is extremely valuable and educational. Immediately, I wanted to become involved. I am honored to be an ambassador and hope to provide another voice of advocacy for the LMS community. I am so grateful to Annie, her husband, Mitch, and their fellow Board Members for all their tireless work, dedication, and community outreach to this important cause. Thank you so much!
Dad was diagnosed with a Rhabdomyosarcoma when I was just 12 years old. I remember at the time it
was the scariest thing that could happen to our family. My father was admitted to NIH in Bethesda MD
for a clinical trial. During the same time another family from our hometown was getting the same scary
diagnosis. He too as well attended NIH on the same protocol. NIH started both patients at the same
time with 2 different treatment plans. My dad always had a deep dislike of doctors, he always told me,
“They call it practicing medicine for a reason.” A few months later the other gentleman was beaten by
Rhabdomyosarcoma. Dad’s treatment by no means was easy. He was administered chemotherapy and
radiation. Being raised Jehovah’s Witness he also tried many herbal remedies, and teas. I do not recall
how long my father was treated; I do remember the day he celebrated the word remission.
May 1989, I graduated high school and was set for college. Our family doctor who had
previously diagnosed my dad had scheduled a hernia operation for myself. I lifted a lot of weights
during football practice and apparently pushed it. June 19 th , I awoke after surgery, all I remember is a
couple of doctors looking for moles on my body and discussing my surgery with concern. Due to my
father being an NIH patient I was put on a plane within a few days where I was given my LMS diagnosis.
I was also informed that it had spread to my lungs, and I had 24 tumors in them. At that time due to
my age, I was allowed to stay on the 13 th floor pediatrics. There’s a whole new level of scared when
being told you have possibly 3 months left of your life. I recall sitting in a conference room with several
doctors and this was the best outcome! How? Unless I wanted to start an intense treatment of
chemotherapy. I knew at this time everything I had watched my father endure was now my only hope.
I used to keep a journal of everything that was administered to myself and every test that I had
done. I used that as a catalyst to how I was going to feel. I remember only a couple of the names of the
chemotherapy treatments, mainly because they really left an impression. Adriamycin and Cytoxan,
combined every 13 days. It always felt like death and would put me out for a couple of days. I would fly
back home to KY in between treatments where I pretty much was taken straight from the airport to our
local hospital and admitted. During that time, I would receive blood, platelets as well as a mild
chemotherapy. About 4 months in NIH had not seen the results from the chemo that was desired. I
was then put on a chemo/radiation protocol. This lasted for 3 months, luckily for myself and my family
NIH had just opened The Children’s Inn at NIH. I was amongst the 1 st group of kids to stay there with my
family. Most days I would receive radiation and then go tour around Washington, DC or take some of
the family trips the hospital offered with my chemo pump constantly going.
I will never say the road was easy in fact it was nothing but that. There was a social worker that
I talked to that offered me the opportunity to donate semen in case I would like to have kids. “Why
would I want to put my kid though this?” My kidneys had shut down from all the chemo at least twice.
In 15 months, I spent 396 days in a hospital and had 169 blood transfusions. In the early 80’s AIDS had
become a pandemic. Luckily, I only contacted Hepatitis C.
I never finished all my treatments. I believe I had 3 left when the doctors discovered a dormant
tumor lodged in my left lung. The doctors wanted to remove some of the lungs and tissue around them.
This was probably the biggest decision my father ever let me make in my life. Dad asked me what I
wanted to do, and I was done. Mentally and physically.
There are a lot of factors that contribute to 33 years LMS free. I attribute a lot of this to my
family and knowing that a diagnosis of cancer does not mean death. I thank NIH for allowing myself to
be a pediatric patient. When you see children that are younger than yourself struggling to walk down
the hallway with their IV tree, or infants clinging to their mothers because they are scared. It changes
you. The many doctors and nurses that consulted and comforted myself as well as my hospital
counselor. I wish I remembered more of their names; they would be proud to see me now. The biggest
factor is my attitude. When given the decision to either lay down and die or stand up and fight. I
choose the fight. As a survivor, I will guarantee that you, and nobody else understands your body like
yourself. You are your biggest advocate.
I am now 51 years old. I do have complications from chemotherapy and radiation to this day. I
have been treated for Hepatitis C and cured. I like everyone else that has been diagnosed with cancer
no matter what kind constantly check for knots, bumps, or anything else that is questionable. I am
happily married with 2 stepchildren. My wife and I decided in 2019 to find a simpler life and moved to a
rural area of Georgia and live on a lake. Although LMS is a rare disease I have volunteered for several
fundraisers, as well as being available to talk through organizations such as the LMS LifeLine Buddy and
Inmerman Angels. I like all those before me fighting LMS are an inspiration, and a miracle. Nobody
fights alone and we will get to the cure.
Bruce Kobritz is a Senior Advisor at Diamond Capital. He has over three decades of transactional, operational and consulting experience with companies in biotech, life sciences, healthcare services and medical devices including 15 years as a Managing Director at Diamond. Now as a Senior Advisor he brings that lifetime of experience to Diamond clients helping them to evaluate strategic options and to plan and prepare for growth.
As a principal and an operator of both investment banking and consulting firms, he possesses special insight into maximizing shareholder value for healthcare clients. During his career, Bruce has run the Emergency Room at UCLA Medical Center, participated in the planning process for new hospital and/or medical services expansion at Kaiser Permanente, and executed the strategy leading to the sale of a publicly traded biotech company to an industry leader.
Bruce previously was with the turnaround/restructuring firm Crossroads Partners, where he was involved in a wide variety of sell side, buy side, capital raising, restructuring, valuation, due diligence and operational assignments, ranging from the reorganization of a NYSE Health Insurer, to providing Financial Advisory services to the creditor’s Committee of a Provider Network following the State of California’s takeover of this billion dollar a year physician practice management company.
Bruce received a Master of Science in Business Administration from UCLA’s Anderson School of Management and his B.B.A. from University of Massachusetts.
Bruce is a very involved and active Caregiver to his wife Jill, an LMS Survivor. He also feels that he has been well-supported by the National Leiomyosarcoma Foundation and is happy to contribute / give back, as a fellow board member.