Board of Directors

Elisa Glass, Executive Director

Email: Elisa.Glass@understandingmyositis.org

Myositis Support and Understanding (MSU) marks a significant milestone as it celebrates its 10th anniversary and welcomes Elisa Glass as its first Executive Director. This new leadership reflects our unwavering commitment to enhancing the lives of Myositis patients and their care partners, showcasing a decade of growth and dedication in our mission.

Founded by Jerry Williams in 2015, MSU has continuously focused on empowering the Myositis community through direct support, advocacy, and impactful research. Elisa brings invaluable expertise and a personal connection to her role, fueled by her journey as a Dermatomyositis patient. Her background in public health and advocacy positions her perfectly to elevate MSU’s mission as we enter our next chapter.

With exciting initiatives on the horizon, including a Myositis educational summit and a return of the Myositis Moon Walk, MSU is poised to deepen its financial assistance programs and amplify legislative advocacy efforts. Our commitment remains steadfast: ensuring that every Myositis patient feels seen, heard, and supported.

As we celebrate this remarkable journey, we look forward to continuing our work with passion and purpose, ensuring no one navigates Myositis alone. Join us in this transformative moment, and stay tuned for what’s next at MSU!

President, MSU & Executive Committee Oversight ‘Right Now’ 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.

Shirley Schnieders, Treasurer

Email: Shirley@understandingmyositis.org

Shirley has over twenty years of extensive experience in finance.  She received her Bachelor of Arts in Accounting from Buena Vista College.  Since then, she has served in several positions as a financial accountant and sales operations controller.  Following her diagnosis of Anti-Synthetase Syndrome, she joined MSU because of the support, concern, advice, and love the members share with each other.  She believes this is the key to surviving any form of Myositis.  It is her desire to use her accounting skills to help MSU continue to grow.

Manuel Lubinus, Chief Science Officer (CSO), Director ‘Right Now’ Research, Chief Science Officer

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”.

Randy Berry, Director

Email: Randy.Berry@understandingmyositis.org

Randy Berry worked in the electric grid industry for over 3 decades.  During that time, he travelled to many countries to implement advanced technology and improvements in the electric grid.  After being diagnosed with Inclusion Body Myositis (IBM) in the fall of 2018, he decided to retire in 2020 to make the most of his time outside of the work that he very much enjoyed.

Randy has served on multiple industry boards and university boards. He is currently serving on the College of Computing board at Michigan Tech University, where he is also a Computer Science alumni.

Since 2018, Randy has actively researched IBM to gain a better understanding of the disease.  His research has put him in contact with researchers, medical professionals, and people affected by IBM.  Randy is passionate about seeking improvements for patients and caregivers impacted by IBM.  As a board member of Myositis Support and Understanding, he hopes to advance the agenda of the organization and to help individuals.

His former hobbies include snow skiing, sailing, softball, soccer, biking, golf and many other activities.  His current hobbies include road trips/sightseeing, handyman projects around the house, hiking, ping pong, and “grandparenting”.

Marlene Jansen, Director

Email: Marlene.Jansen@understandingmyositis.org

A retired telecom professional based in southern Ontario, Marlene now dedicates her time and energy to caregiving, advocacy, and animal welfare. Her special connection to the Understanding Myositis organization comes from her role as care partner for her  husband who lives with inclusion body myositis (IBM), and riding the rollercoaster from diagnosis to adaptation. She also cares for her 92-year-old mother.

Her journey as a caregiver began in 2008 when her  brother suffered a massive stroke. Since then, she has become deeply familiar with the challenges faced by people with disabilities and their families. This firsthand experience has made her a passionate advocate for accessibility, inclusion, and the often-overlooked needs of caregivers.

At home, she shares life with her husband, daughter, a devoted dog, and a spirited cat. As a lifelong animal lover and champion for the underdog—whether two-legged or four—she strives to create compassion and understanding wherever she can.  She adores animals and has worked as a volunteer with various rescue and rehabilitation organizations.  She also provides assistance to the drug addicted and homeless women in her  community.  

In her  downtime she loves to crochet and confesses to spending too much time on Facebook.   

Mohammed Harris, Director

Email: Mohammed.Harris@understandingmyositis.org

With a multidisciplinary background spanning genetics, public health, public affairs, and business leadership, Dr. Harris has dedicated his career to advancing patient-centered diagnostics and promoting equitable access to innovative health technologies. His work bridges industry and academia, with a strong focus on rare diseases, oncology, and clinical biomarker integration across pharma and translational research programs.

As a member of the MSU Board of Directors, Dr. Harris is committed to supporting the organization’s mission to improve the lives of people affected by myositis through education, support, and research advocacy. He brings a passion for connecting cutting-edge science with compassionate care—strengthening partnerships that empower patients, accelerate diagnostic innovation, and expand health equity across the rare disease community.

Dr. Harris is honored to collaborate with the MSU leadership and community to advance understanding, inclusion, and meaningful progress in myositis. In his free time, he is training his four beautiful daughters to become WNBA players.

Benita Moyers (on extended medical leave), Creator of Myositis Moon Walk

Email: Benita@UnderstandingMyositis.org

Jerry Williams, Founder, Chief Heart Officer, Board Member Emeritus

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. He is passionate about helping others living with this rare disease and that is why he created this loving, empathetic organization led by volunteers.

Due to a decline in his health, on Jan. 1, 2024, after serving for 13 years, Jerry resigned as the President of MSU. However, Jerry will stay on as Chief Heart Officer and will work on projects dear to him. Lynn Wilson succeeds him as the new president. They have worked side by side for 5 years and Jerry has full confidence and is excited about Lynn taking the helm and leading MSU forward.

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, 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.

Lynn Wilson, BSc

Executive Committee Oversight ‘Right Now’ Research

Email: lynn@understandingmyositis.org

Diagnosed in 2015 with dermatomyositis, Lynn has long envisioned a more patient centered research approach where the myositis community was more actively involved in all stages of the research process. Co-created with Manuel Lubinus, ‘Right Now’ Research is the culmination of that vision, providing a new and innovative approach that gives power to the patient and promotes research that better reflects myositis patients lived experiences.

Manuel Lubinus, PhD

CSO, Director ‘Right Now’ Research

Email:  mlubinus@understadingmyositis.org

Based in Dallas, Manuel Lubinus, PhD, serves as Chief Science Officer of MSU and Director of ‘Right Now Research’, driving the organization’s research agenda and patient-led initiatives. He collaborates with investigators across the US  and internationally to advance myositis research strategies, bringing expertise in science communication, nonprofit governance, and patient-centered advocacy.

Laura Martinez Prat, PhD

Mgr. Special Projects

E-mail: LauraMPrat@understandingmyositis.org

Based in Barcelona, Laura’s professional work focuses on developing and implementing novel biomarkers for autoimmune diseases. At ‘Right Now’ Research, she aims to bridge the gap between research and real-world application to improve care management strategies for myositis patients.

Austin Cyphersmith, PhD

Mgr. Medical Communication 

Email: Austin.Cyphersmith@understandingmyositis.org

As an MDA5 Dermatomyositis patient and double lung transplant recipient, Austin brings a unique patient perspective to his role. Combining his PhD background in research and academia with lived patient experience, he strengthens MSU’s medical communications strategy, ensuring that research findings and patient-driven insights reach both scientific audiences and the broader myositis community.

Pai Hu, MS

Mgr. Survey Design, Statistics & Analysis

With a background in marketing research, Pai leads efforts to ensure that study design and analysis accurately reflect the patient perspective. A self-described “data nerd,” she enjoys uncovering insights hidden within datasets and transforming them into actionable findings that inform patient-centered research and organizational strategy.

Marta J. Narvaez, M.Sc.

Translational Medicine Project Lead

Based in Florida, Marta Narvaez brings over a decade of experience in clinical research across autoimmune, oncology, and cell therapy studies. With a strong background in biomedical sciences and regulatory operations, she leads MSU’s translational medicine initiatives, advancing mitochondrial cell therapy programs toward preclinical and IND readinesshabits and nutrition in Myositis management and identify ways in which healthy habits can improve patient quality of life.

Stephen Moore, Neuroscientist

Research & Education Communications Liaison – Rheumatology & Neurology

E-mail: stephen.moore@understandingmyositis.org

Stephen Moore fosters collaboration between MSU and professional societies such as ACR, ARP, and others. His work strengthens research visibility and clinician education, ensuring patient-led insights inform rheumatology and neurology training, advocacy, and the dissemination of resources to improve myositis care

Diagnosed with dermatomyositis in fall 2012 after years of unexplained symptoms, Stephen Moore dove into the literature, sought support, and discovered MSU—a true family that aligned perfectly with his drive to guide others through diagnosis and beyond. His passion fuels advocacy, education, fundraising, and research advancement for neuromuscular and autoimmune diseases, making MSU the ideal platform to amplify patient and caregiver voices.

With more than a decade at the University of Alabama at Birmingham Heersink School of Medicine, Moore advanced neuroscience with DARPA-funded projects on learning and memory, postmortem human brain studies on chemical signaling, and cutting-edge work on neuromuscular and muscle diseases. He built translational pipelines from animal models to clinical settings, developing novel diagnostics and therapeutics for motor neuron and neuromuscular disorders—discoveries poised to impact a range of human conditions. Moore also collaborates with pharmaceutical companies to support their myositis clinical trials. His expertise lets him distill complex science for diverse audiences, boosting community engagement.

In June 2020, Moore faced renal cell carcinoma, a known dermatomyositis risk, but successful treatments and his unshakeable positivity—bolstered by family, friends, and colleagues—prevailed. This journey deepened his commitment to neuromuscular research, inspiring hopes for new myositis therapies.

Active in leading organizations, including the Society for Neuroscience, University of Alabama Medical Alumni Association, American College of Rheumatology (ACR) ARP Executive Committee, MIHRA, IMACS (International Myositis Assessment and Clinical Studies Group), and MCTC (Myositis Clinical Trials Consortium), Moore bridges research, policy, and patients.

Stephen lives with his wife Shaylee and feline companions Maui and Bagheera. An avid outdoorsman, Alabama football fan, and Lake Martin water enthusiast, he thrives on family lake house adventures.

Dr. Raiha Shabaz

Clinical Researcher

Email: RaihaShahbaz@understandingmyositis.org

Dr. Raiha Shahbaz is a medical graduate currently preparing for her U.S. residency applications through the USMLE exams. An aspiring primary care physician, she takes a holistic approach to health, integrating physical and mental well-being. Her research focuses on the role of healthy habits and nutrition in managing myositis and improving patients’ quality of life. a trusted authority.

William (Bill) Tillier,BSc, MSc.

IBM Patient Researcher and Advisor

E-mail: bill.tillier@gmail.com

Website: ibmmyositis.com

After being diagnosed with Inclusion Body Myositis (IBM), Bill immersed himself in studying the literature and developed a website to share information with both professionals and patients. He is recognized as a trusted authority and advocate within the IBM community, contributing invaluable patient-researcher expertise to MSU’s initiatives.

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.  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.

Prateek Gandiga, M.D.  FACP

Emory Rheumatology

Didem Saygin, M.D.

Rush University, Rheumatology

Lauren Graham, MD, PhD, FAAD

Dermatology, Vice-Chair of Clinical Affairs for the Department of Dermatology, Director of the Autoimmune Blistering Skin Disease Clinic, co-director of the Rheum/Derm Clinic

Dr. Lauren Graham received her MD and Ph.D. from University of Alabama at Birmingham.  She completed her dermatology residency training at Northwestern Hospital in Chicago and completed a research fellowship in skin fibrosis.  She returned to UAB where she directs the Rheumatology/Dermatology clinic and the Autoimmune Blistering Skin Disease Clinic. She is interested in the skin manifestations of autoimmune diseases.

Salman Bhai, M.D., Medical Advisor

VP, Clinical Development, Secretome Therapeutics

Assistant Professor, Neurology, UT Southwestern

Dr. Salman Bhai brings clinical and research expertise to his role at Secretome Therapeutics. He has held leadership positions at Taysha Gene Therapies, Relay Therapeutics, and Epirium Bio, where he advanced novel therapeutics through preclinical and clinical stages. Previously, as the Director of the Neuromuscular Center at the Institute for Exercise and Environmental Medicine,  Dr. Bhai led care and research for complex neuromuscular conditions, including myositis. He earned his MD from Harvard Medical School and completed his residency and fellowship at Mass General Brigham.

At Secretome Therapeutics, his leadership in clinical development for novel therapeutics is grounded in extensive neuromuscular expertise. 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.

With a career that spans over the nexus of clinical practice and translational research, he has honed skills in pre-clinical studies and clinical study design, vital for innovative therapies. He is dedicated to improving the lives of patients and their families through drug development and clinical practice.

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

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