“Where Purpose Meets Progress – in advancing collaborative priorities and patient community engagement – to accelerate progress for Leiomyosarcoma Precision Medicine = Research – Clinical Trials -personalized treatment and care”.
The collaborative mission of the National LMS Foundation and the Cynthia Holmes Foundation is to bring the patient and research communities together to prioritize outreach, inclusivity, to make a profound impact on improving diagnosis and treatment, and accelerating research for this rare cancer.
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.
Evita Henderson-Jackson, MD
Anatomic Pathology & Clinical Pathology Moffitt Cancer Center, Tampa, FL
Janai Carr- Ascher, MD
Assistant Professor / Carr-Ascher Lab
Specialty, Molecular Biology Medicine
UC Davis, Sacramento, CA
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
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).
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.
NLMSF Community Outreach
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.
After having gone through two rounds of his own “dance with the devil” in the form of stage four throat cancer, Tom “Papa Kubs” Kubinski feels strongly about using the knowledge he gained through those experiences to help others navigate their own cancer journeys with hope and awareness.
Tom is a 20-year member of Alcoholics Anonymous and a proud husband to Katie and dad to three awesome kids. He is honored to be a member of the National Leiomyosarcoma Foundation board and its mission to advance research on leiomyosarcoma and provide resources to those going through the disease’s diagnosis and treatment. Books written by Tom can be found at: bit.ly/Kubs2020
Shakeya Allen is the Founder of Uterine Cancer Awareness Network Inc an IRS approved 501c3 since 2019. Shakeya is a survivor of adenocarcinoma diagnosed at 27 years old. Shakeya has experienced infertility due to her course of treatment.
Because of the lack of information, she had a hysterectomy and forfeit her chances of giving life in hopes to save her own. It has been 10 years since her diagnosis and now she is an advocate for uterine cancer awareness and support something she is very passionate about and promises to make a difference!
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
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!
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.