Meet our those often working hard behind the scenes at Myositis Support and Understanding (MSU), an all volunteer-managed, patient-centered nonprofit empowering the myositis community.
Jerry Williams, Founder and President
Gerald “Jerry” Williams, diagnosed with Polymyositis in 2003, 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, Vice President
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, 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.
Jim Doiron, Board Member
James “Jim” Doiron was diagnosed with Necrotizing Autoimmune Myopathy (NAM) associated with the Anti-SRP antibody in 2017. In less than two months, he went from a do-it-yourself master bathroom remodeling project to being unable to lift his 4-year-old grand niece. In June 2018, Jim learned that he has steroid-induced cataracts.
Caitlin Ray, Board Member
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.
Mary Arnold, Board Member
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.
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.
William (Bill) Tillier, International Scientific Advisor
Bill 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, Patient-Centered Research Advisor
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 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 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 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 grown-up daughters. Manuel enjoys history and genealogy and
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.