Meet the MSU Board of Directors

Jerry Williams, Founder and President of Myositis Support and Understanding (MSU), living with dermatomyositis

Jerry Williams, Founder and President

Email: Jerry@UnderstandingMyositis.org

Jerry Williams, originally diagnosed with Polymyositis in 2003, (later changed to dermatomyositis), founded MSU originally as a Facebook support group titled, “Polymyowhat: Understanding Myositis,” in 2010. Jerry is the Founder and President of MSU and also serves as the Co-Executive Director with Lynn Wilson. He is passionate about helping others living with this rare disease.

Lynn Wilson, MSU Vice President

Lynn Wilson, Vice President and Director of Patient-Centered Research

Email: Lynn@UnderstandingMyositis.org

Lynn comes to the Board with 38 years of experience in the petroleum industry working as a petroleum engineer focusing on oil field research, operations training, project management and organizational change. Her career has taken her all over the world, flying over 1.5 million miles to 6 continents, including a year assignment in Hong Kong.

Penny Bundy

Penny Bundy, Treasurer

Penny Bundy was diagnosed with Inclusion Body Myositis in 2015, after 7 years of experiencing symptoms of the disease with no clear diagnosis. In researching the disease, she found and joined an online MSU support group. It was because of Penny’s positive experience with this group that she was excited about joining the MSU team.

Mary Arnold, Board Member

Mary Arnold, Secretary

Email: Mary@UnderstandingMyositis.org

Mary Arnold was diagnosed with sIBM via muscle biopsy in 2018, but had been displaying symptoms since 2012.

She retired from a 15-year tenure as the head of the Journalism and Mass Communication Department of South Dakota State University in 2017. She was also the assistant to the Dean of the College of Arts and Sciences for marketing and communication.

Caitlin Ray

Caitlin Ray, Board Member

Email: Caitlin@UnderstandingMyositis.org

Caitlin Ray is currently PhD Candidate at the University of Louisville Rhetoric and Composition program, where she also teaches writing and communications in the English department, the Health Sciences Campus, and the College of Business. She graduated with a BA in English and Theatre from Hamline University in St. Paul, MN, and worked as an actor in the Twin Cities for several years. When she was 22 years old, she was diagnosed with dermatomyositis.

Benita Moyers

Benita Moyers, Board Member, Anti-MDA5 DM Study Advisor

Email: Benita@UnderstandingMyositis.org

Benita Moyers is a retired Kindergarten teacher from Huntsville, AL. She spent much of her career serving as a leader and advocate for the Alabama Education Association Board of Directors and the Association of Classroom Teachers Board of Directors. She served in various roles for the Madison County Education Association including President, Vice- President, and Secretary. She was chosen by NORD to serve as an Ambassador for Alabama. Mrs. Moyers not only has a passion for advocacy and leadership, but she enjoys presenting and training at the local, state and national levels. Her primary focus has been on Social and Emotional Learning, Mental Wellness, technology, and multi-sensory education. She is a certified Google Trainer and works with educators and administrators to help them become Google Certified. In 2019, she became certified to hold support group meetings for the Happy Teacher Revolution. In 2020, she worked with the National Education Association (NEA) Social and Emotional Learning Team to create learning modules for educators and to rewrite the NEA Leadership Competencies Framework.

In late 2020, Benita was diagnosed with Anti-MDA5 positive Dermatomyositis. This drastically altered her life and forced her to begin working remotely from home. After struggling with doctors and medications, she made the decision to retire from education and focus her energies on her family and advocating for Myositis and other rare diseases. She found support and understanding as well as a family in the Myositis Support and Understanding group. She is thrilled and honored to be chosen to serve on the MSU Board of Directors to help our MSU community continue to grow and spread awareness.

Manuel Lubinus

Manuel Lubinus, Board Member and Chief Science Officer

E-mail: MLubinus@Understandingmyositis.org

Manuel Lubinus was diagnosed with Inclusion Body Myositis (IBM) in the spring of 2019, after suffering from symptoms for four years. He tried to learn as much as possible about the disease and what type of resources were available to patients. This way he discovered the MSU network of support, gaining a new understanding of the disease stages after attending support sessions and exchanging ideas with the community members on Facebook. He wants to contribute in the areas of patient advocacy and patient-centered research, helping to accelerate the discovery of new treatments for Myositis.

Manuel has a doctorate in Immunology and an MBA, spending the last 25 years involved in both bench research and marketing management for pharmaceutical and medical device companies. In 2020, after his diagnosis, Manuel took the decision to retire from corporate life and dedicate the coming years to making a difference in myositis patient advocacy. Twelve months of interacting with patients and physicians at different settings has provided him with a new appreciation for the warriors who fight these conditions every day with a smile on their faces. “It’s impossible not to be moved by the courage of the myositis support group,” he said, “how important it is to be a part of a community that cares about you when you have a rare disease”.

Manuel’s interests include finding ways to move forward with a patient-centered collaborative network approach to improve treatment outcomes, starting with patient registries, natural disease studies, and biobanks. He is interested in working with other patient advocacy groups in myositis and bringing the voice of the patient into future research.

Manuel is originally from Colombia and has lived in many states in the last 30 years including South Carolina, Pennsylvania, New Jersey, New York, and Texas. He lives in Frisco TX for the last 15 years, with his wife Florence. They have two adult daughters. Manuel enjoys history and genealogy and reconnecting with relatives in places like Germany and the Netherlands.

Emily Filmore

Emily A. Filmore, Board Member Emeritus

Emily is a founding director of MSU and has held various roles in the organization including Vice President and Advisor to the Board, as well as with the daily operations helping in our support groups and live support sessions. Emily holds a BA in Psychology from Westminster College in Fulton, MO and a Juris Doctor from St. Louis University School of Law, but her career path has been as winding and unpredictable as the Juvenile Dermatomyositis that has gripped her body for 20 years. Combining humor and spirituality, Emily has found a way to make peace with her chronic disease, even celebrating it, grateful for the lessons and blessings it has brought into her life.

Sandy Block

Sandy Block, Board Member Emeritus

Sandy is a founding member of MSU, former Board Vice President and senior administrator of the MSU groups and public information page. Her interest and background in research and writing and as her parents’ healthcare advocate have helped her through her cope with PM and treatment-related issues. She is passionate about helping others become knowledgeable about their health issues and empowered to become their own healthcare advocate.

Patient-Centered Research Team

The board members who are also a part of the Research Team are shown above and include:

Director of Patient-Centered Research, Lynn Wilson

Chief Science Officer, Manuel Lubinus

 Anti-MDA5 DM Study Advisor, Benita Moyers

Dr. Salman Bhai, Neurology, UT Southwestern

Salman Bhai, M.D., Medical Advisor

Director, Neuromuscular Disease Center
Institute for Exercise and Environmental Medicine
Texas Health Presbyterian Hospital Dallas

Assistant Professor 
Neuromuscular Division, Department of Neurology
UT Southwestern Medical Center

Dr. Salman Bhai is an Assistant Professor in the Department of Neurology and Neurotherapeutics at the University of Texas Southwestern Medical Center and Faculty Member at the Institute of Exercise and Environmental Medicine (IEEM) at Texas Health Presbyterian Hospital Dallas. He earned his B.S. in mathematics at Duke University and his M.D. from Harvard Medical School, where he earned multiple research grants. He completed his internship, neurology residency, and neuromuscular fellowship at Harvard: internship at Brigham and Women’s Hospital and residency and fellowship in a joint program between Massachusetts General Hospital and Brigham and Women’s Hospital. He is grateful for the unique neuromuscular mentorship, training under several neuromuscular experts including Drs. Anthony Amato and Steven Greenberg (Brigham and Women’s Hospital) and Drs. William David, Amanda Guidon, and Reza Seyedsadjadi (Massachusetts General Hospital), amongst several others.

Dr. Bhai specializes in the evaluation, diagnosis, and treatment of neuromuscular disorders. He specifically focuses on patients with inflammatory and metabolic myopathies as well as those with immune checkpoint inhibitor complications.

His research focuses on understanding how muscles communicate with other organ systems, particularly when muscle is inflamed, like in myositis. The goal of his research is to better understand, diagnose, and treat patients with myositis. This will be achieved through exercise and muscle physiology studies of myositis patients by analyzing biospecimens for molecular perturbations. He also will offer clinical trials for myositis patients.

Dr. Bhai is dedicated to helping patients and their families understand and navigate difficult conditions by providing world-class clinical care.

Dr. Bhai’s Bio and Contact information is available at https://profiles.utsouthwestern.edu/profile/83540/salman-bhai.html.

University of Texas Southwestern Medical Center (UTSW) Research Approach

Institute of Exercise and Environmental Medicine  (IEEM) Research Approach

Abhiram Bhashyam, MD, PhD, MSU Research Partner

Abhiram Bhashyam, MD, Ph.D., Research Partner

Abhiram Bhashyam, MD, Ph.D., Hand and Upper Extremity Surgeon, Massachusetts General Hospital, Harvard Medical School

Dr. Abhiram R. Bhashyam is a fellowship-trained hand and upper extremity surgeon who brings expertise in performing a wide range of simple to complex surgeries to help patients regain meaningful function of their hands and arms. He understands the deep impact hand and upper extremity problems can have on patients’ lives—treatment begins with partnering with patients to provide individualized care to achieve the best possible outcomes, whether surgery is needed or not.

Dr. Bhashyam received his B.S. in Biomedical Engineering and Applied Math & Statistics at The Johns Hopkins University, where he graduated with the highest honors. He received his MD from Harvard Medical School and completed his residency at the Harvard Combined Orthopedic Residency Program where he served as a chief resident. He then completed a Hand and Microvascular Surgery Fellowship at the University of Washington, Harborview Medical Center, and Seattle Children’s Hospital. Dr. Bhashyam also earned an MPP from Harvard Kennedy School of Government and a PhD at Utrecht University in the Netherlands.

Guided by his drive to improve clinical outcomes, Dr. Bhashyam has won several prestigious research awards at national and international meetings and is widely published in peer reviewed academic journals. He is passionate about ensuring optimal patient outcomes while training the next generation of residents and medical students. In recognition of his clinical care, research and teaching, Dr. Bhashyam received the James H. Herndon Award for resident teaching and mentoring and Best Clinical Thesis award upon graduation from residency. He is a member of the American Orthopaedic Association’s Emerging Leaders Program, American Society for Surgery of the Hand (ASSH) and American Academic of Orthopaedic Surgeons (AAOS).

Dr. Bhashyam’s goal is to help patients get back to what they enjoy most, often using a multidisciplinary approach. His clinical interests include hand/wrist/elbow fractures, complex traumatic and post-traumatic reconstruction of the upper extremity, nerve injuries and reconstruction (including brachial plexus injuries), treatment of stiff or unstable elbows, wrist and elbow arthroscopy, joint replacement or reconstruction for hand/wrist/elbow arthritis and pediatric hand surgery. Many of his patients also see him for old injuries that never properly healed, debilitating pain or nagging injuries that impair quality of life.

“You have to listen first and only by listening can you learn how to help your patient.”

Read full Bio and watch the video at:  https://www.massgeneral.org/orthopaedics/doctors/22431/Abhiram-Bhashyam

Massachusetts General Research Approach: https://www.massgeneral.org/research/about/overview-of-the-research-institute

William (Bill) Tillier

William (Bill) Tillier, International Scientific Advisor

E-mail: bill.tillier@gmail.com

Website: ibmmyositis.com

William “Bill” Tillier, BSc, MSc., received a bachelor of science degree from the University of Calgary and a master of science degree from the University of Alberta. After graduation, he worked as a forensic psychologist for over 20 years for both the federal government of Canada and the Alberta government. After developing inclusion body myositis, Bill studied the literature on his illness and created a website to provide information to both professionals and patients. Bill became active as a volunteer for the Canadian Muscular Dystrophy Association and served for five years on their medical and scientific advisory Board. He was very active giving lectures on various topics related to chronic illness and neuromuscular disease, including myositis. In addition to his interest in myositis, Bill also has an interest in personality and how it develops. In 2018 he had a book on the topic published.

Izandra Rudolph, Community Outreach Advisor

Izandra Rudolph, Community Outreach Advisor

Email: Izandra@understandingmyositis.org

Izandra is pursuing her Masters of Education in Mental Health Counseling at Auburn University Montgomery in Montgomery, Alabama.  She is an advocate for underserved youth in rural communities throughout the South and is dedicated to community service.

Before taking medical retirement, she was a Speech Language Pathologist for 10 years. Izandra is a myositis warrior and has been fighting this disease for 9 years. She will bring a strong voice to the issues we face in improving outreach.

datastrategy

Pai Hu, Research Consultant and Data Specialist

Pai will be leading our efforts to develop a comprehensive Data Strategy for MSU.

Pai started her career in Marketing Research then on to Marketing, leveraging her expertise in Brinker International and Essilor of America and Essilor International.  She has an MA in French Literature from that other MSU (Michigan State University) and an MS in Hospitality and Tourism with a focus on marketing research from Purdue.

By her own admission, Pal is a data nerd who loves data analysis and the challenge of discovering the hidden information that lies beneath the surface.

Stephen Moore, CME and DM Projects Coordinator

Stephen Moore, Neuroscientist, CME and DM Projects Coordinator

E-mail: stephen.moore@understandingmyositis.org

Stephen Moore was diagnosed with Dermatomyositis in the fall of 2012, however, looking back he was suffering from symptoms for many years before his diagnosis. He promptly read all the literature about Dermatomyositis and tried to comprehend every aspect of the disease. He then reached out for support and that is when he discovered MSU. He quickly recognized that this organization was something different and felt more like a family which was something he was desiring. Moore was determined to help others that have been diagnosed as well as those going through the diagnosis process. He would help them navigate the waters of knowledge and ultimately steer them towards MSU.

Moore’s passion lies in advancing research efforts in neuromuscular and autoimmunity disease as well as working with non-profit organizations to provide advocacy, education, and fundraising that supports patients and caregivers living with the uncertainties of these diseases. So Moore understood that MSU was the perfect avenue to put his enthusiasm into as it checked all the boxes and went further than what he expected. He is very excited to be working on patient-centered research projects for MSU as the CME and Dermatomyositis Projects Advisor.

Moore is a young, budding neuroscientist and has been doing translational biomedical research at the University of Alabama at Birmingham School of Medicine for over a decade. While Moore was working on his Ph.D. in Biomedical Sciences with an emphasis in Neuroscience, he conducted research on a variety of projects from DARPA-funded grants on learning and memory, to utilizing postmortem human brains to study how the brain communicates with other parts via a variety of chemical signals. Most recently, he was conducting studies that are providing insight into neuromuscular diseases and muscle disease. Moore was helping build multiple translational pipelines from animal models to the hospital clinic, focusing on the development of novel diagnostics and therapeutics for motor neuron disease and neuromuscular disease. In the long term, the breadth of our basic science discoveries is likely to impact multiple human disorders. With his educational background, he can understand complex medical and technical concepts, clearly translate them to diverse audiences, and elevate community education and engagement for these causes.

Moore knew there was always a higher chance of developing cancer with Dermatomyositis and that came to fruition in June of 2020. He was diagnosed with Renal Cell Carcinoma but as of today, his treatments appeared to have been successful! Moore thinks to this day, it is still a constant learning process with new treatment plans; but he knew that if he kept a positive attitude and outlook, good things would come. He knew he had this great support team of family, friends, and classmates that helped him find his new self. This has pushed him to help others in need who have been affected by neuromuscular diseases. He hopes to one day discover new treatments to help others who suffer from similar diseases such as myositis. His battle has piqued his interest In neuromuscular and autoimmune diseases.

Moore is active in many professional societies such as the Society for Neuroscience and the University of Alabama Medical Alumni Association.

Moore is recently engaged to his fiancé, Shaylee, and looks forward to the wedding day! They have two feline fur babies named Maui and Bagheera. He loves the outdoors, football, and being on the water at their family lake house on Lake Martin in Alabama.

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