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Board of Directors

Dedicated, passionate volunteers

Meet our board of directors behind our all volunteer-managed, patient-centered, nonprofit, Myositis Support and Understanding (MSU).

Jerry Williams

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 Executive Director. He is passionate about helping others living with this rare disease.

Lynn Wilson, MSU Vice President

Lynn Wilson, Vice President

Email: Lynn@UnderstandingMyositis.org

Lynn comes to the Board with 38 years 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

Email: Finance@UnderstandingMyositis.org

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

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.

Emily Filmore

Emily A. Filmore, Advisor to the Board

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.

Dr. Salman Bhai, Neurology, UT Southwestern

Salman Bhai, M.D., Medical Advisor

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

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.

Manuel Lubinus

Manuel Lubinus, Patient-Centered Research Advisor

E-mail: MLubinus@Understandingmyositis.org

Manuel Lubinus was diagnosed with Inclusion Body myositis in the spring of 2019, after suffering with symptoms for four years. He tried to learn as much 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 make 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 face. “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 grown-up daughters. Manuel enjoys history and genealogy and reconnecting with relatives in places like Germany and the Netherlands.

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.

© 2021 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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