In 2022, The Myositis Association continues our quest to support our patients and care partners in being “Encouraged, Engaged, & Empowered” as we work all month long to create broader community awareness, direct our members to TMA offerings and resources, educate around patient and disease advocacy, share clinical insights, and build a stronger and more connected myositis community.
All times are Eastern Time
Clinical trials are important for discovering new treatments for diseases, as well as new ways to detect, diagnose, and reduce the chance of developing the disease. Join this engaging session for answers to the most asked questions about clinical trials, such as: Who should consider clinical trials and why? How do you become eligible? Where can I find information? Are clinical trials safe? How can I contribute to clinical research?
Whether a friend, family member or a professional, the primary focus of the patient advocate is the patient and their needs, but patient advocates also see themselves as partners in the healthcare team. The patient advocate partners with the client, empowering them on their healthcare journey, which can include the management of chronic disease, the management of a new diagnosis, support in healthcare access, or a transition in care. Join this empowering session to discover the benefits of patient advocacy and how you might engage with one or become one!
Our thoughts don’t just have psychological effects, they also have physical effects on our body. The advantages of positive thinking include less stress, better overall physical and emotional health, longer life span, and better coping skills. This is even more essential when faced with the challenges of a chronic illness. Join this encouraging session to help you move forward in your myositis journey, with positivity in the forefront.
For many people, managing healthcare gets more complicated with the onset of chronic illness. More health problems mean more doctor’s visits, test results, medications, prescription refills, insurance issues and bills to keep track of. Staying on top of it all can be overwhelming. Understanding the ins and outs of insurance can be extremely overwhelming – from understanding copay and insurance requirements for medical visits, the pre-authorization process, managing your healthcare benefits, working through denials of coverage and appeals, and finding health insurance coverage when you need it most. Join this empowering session on how to manage the world of insurance for yourself or your loved one.
The Myositis Association’s (TMA) mission is to improve the lives of persons affected by myositis, fund innovative research and increase myositis awareness and advocacy. We are a patient-focused organization charged with providing education, support, and resources, for our community, and it is important for all to know how to tap into TMA offerings and services. Join this engaging panel session featuring representatives from our support and affinity groups, Patient and Family Advisory Council, Staff, Board of Directors, and Medical Advisory Board to find out who TMA is, what TMA does, how TMA impacts the myositis community and how you can get more involved.
Adapting to life with a disability is never easy, but there are ways to help yourself cope with limitations, overcome challenges, and build a rewarding life. Myositis shouldn’t stand in the way of living your fullest life possible! Enjoying or discovering new hobbies (or adapting old ones) can be a way to free your mind, add to some creativity and a sense of community to your life. Join this encouraging session on choosing a mindset and activities that focus on your abilities despite the limitations of chronic illness.
The doctor-patient relationship involves vulnerability and trust. The importance of this partnership can be life-changing, however, encounters that flow from it are not always perfect. Relationships can be improved and effect better outcomes when doctors and patients agree on what matters most, engage in active and careful listening, and find ways to truly connect. Join this empowering session to learn how to improve your relationships with medical professionals for the best outcomes.
Myositis diseases create the need to bring together a wide range of expertise in clinical and basic science research. In myositis patient care, depending on the form of the disease, a multidisciplinary team consisting of rheumatologists, neurologists, pulmonologists, pathologists, radiologists, nurses, physical therapists, registered dieticians, or social workers collaborate to provide patients with the most comprehensive care available. Bring your questions and join this encouraging session outlining the latest clinical insights and any updates into all forms of myositis.
The most common symptom of myositis is muscle weakness. The weakness often develops slowly and can be subtle at first. While each myositis condition has its own unique characteristics, and each patient experiences them differently, many patients will experience fatigue and weakness often, and could also have poor or very bad balance leading to frequent falling, have difficulty in talking, have a weak grip, and other similar symptoms. The rate of disease progression varies from person to person as the effects can cause loss in the ability to move and significant muscle shrinkage. Having information about the possibilities of disease progression can help patients feel more prepared to approach the future. Join this empowering session to learn more about progressive weakness and loss of muscle in myositis diseases.
Executive Director - The Myositis Association
Chrissy M. Thornton is the Executive Director of The Myositis Association, an international rare disease patient advocacy organization. She's been recognized for developing professional staff training programs to revitalize departments, and implementing organizational change efforts into growing businesses. Experienced in organizational diagnosis and the design and facilitation of large-scale events and staff development activities, Chrissy has a twenty year background in successful fundraising, donor and corporate relations, digital engagement, grant writing, and the seamless execution of exceptional meetings, events, training seminars, team building sessions, education conferences, fundraisers, peer-to-peer events, and more! Chrissy is the Founder of My Girl Power Hour where she offers a discussion series empowering women to overcome obstacles and live their best lives and My Girl Power Matters, an event based empowerment organization. Chrissy is a published author, has a Master’s degree in Business Administration with a concentration in Organizational Management, is a sought after public speaker, and resides in Maryland with her husband and children.
Rabih Dahdouh, MS, is a Clinical Research Associate at the Center for Health Equity Transformation in the Institute for Public Health and Medicine at Northwestern University Feinberg School of Medicine. Currently, he manages multiple research projects focused on reducing health disparities across the spectrum of disease prevention, diagnosis and treatment. He has an extensive background in brain and behavioral science, innovative health interventions and community/preventive medicine.
Rabih completed his Bachelors in Child Learning and Development and Masters in Psychological Sciences at the University of Texas at Dallas.
In 2016, Michelle joined CSI Pharmacy as Vice President of Patient Advocacy to continue her outreach with patients ensuring that no patient goes without their lifesaving therapy in an affordable site of care.
Michelle began her career, 30 years ago, as a Senior Legislative Assistant on Capitol Hill for a Member of Congress where she specialized in health care policy. Michelle enhanced her knowledge of the health arena as a Partner and Senior Associate at three firms where she represented academic medical centers, patient organizations, specialty hospitals, and health care coalitions. Michelle also served as the Vice President of Government Affairs and Reimbursement Services for the Immune Deficiency Foundation where she further developed her knowledge of patient groups, advocacy and health policy.
Michelle has years of experience testifying before Congress, federal agencies, and state legislatures. She is also a prominent speaker on topics such as Medicare reimbursement, the economics of the plasma industry, health insurance reform, Social Security disability, navigating health insurance, and patient advocacy. Michelle’s hobby is assisting patients to successfully navigate their health insurance policies to ensure that they get covered for their prescribed medications and other services.
TMA Community Member
Prior to diagnosis, Elisa was a professor, specializing in the field of Drug and Alcohol Abuse. She is now the owner of Myths, LLC in which the main purpose of the company is to help community members in need (with a huge focus on homeless veterans).
Tennessee Health Advocates LLC
Former Practice Administrator turned Independent Patient Advocate, Nicole Broadhurst helps busy and committed professionals gain peace of mind and take control of medical bills in 30 minutes without making a single phone call. As CEO and founder of Tennessee Health Advocates, Nicole's mission is to simplify and clarify the healthcare billing system. As a former healthcare insider, Nicole focuses heavily on the opportunities for improvement within the medical billing process to help her clients achieve peace of mind knowing they are not paying a penny more than they actually owe.
Board Chair - The Myositis Association
Dave Mochel, was an orthopedic surgeon for Northwestern Medicine for 25 years. Once diagnosed with IBM, he switched to an administrative job as medical director for Northwestern’s western region. David has an interest in research into myositis treatment, including lifestyle changes, and uses his professional experience to answer questions from members of the Chicago support group. He and his wife, Peg, have homes in Illinois and Florida.
University of Washington, Seattle / DO-IT Center
Kayla Brown is a counselor/coordinator at The DO-IT (Disabilities, Opportuniites, Internetworking, and Technology) Center for the University of Washington, Seattle, where she focuses on equity in higher education for people with disabilities. Her passions are community outreach, research, and disability activism. Kayla works one-on-one with students to work on goal setting, academic planning, and building a support system.
National Institute of Health
After obtaining his M.D. and Ph.D. at Johns Hopkins, Dr. Mammen completed his neurology residency and neuromuscular fellowship at the same institution. He co-founded the Johns Hopkins Myositis Center in 2007. He and his colleagues discovered a novel form of autoimmune myopathy associated with statin use and autoantibodies recognizing HMG-CoA reductase, the pharmacologic target of statins. In 2014, Dr. Mammen moved to the NIH, where he is an Investigator and Leader of the Muscle Disease Unit. In addition to seeing myositis patients at the NIH Clinical Center, he maintains an appointment as Adjunct Professor of Neurology and Medicine at Hopkins, where he continues to see patients at the Myositis Center.
Johns Hopkins Myositis Center
Dr. Christopher-Stine is an Associate Professor of Medicine and Neurology and the Director of the Johns Hopkins Myositis Center. In addition, she serves as a board member of the Institutional Review Board at the Johns Hopkins University and she is one of 24 core faculty members to teach in the Johns Hopkins Medical School Colleges Advisory Program, which provides clinical skills instruction in the first year of medical school and continued career advising throughout all four years of medical school. As a clinician scientist, she utilizes the Myositis Database developed by her and her colleagues for which she is the Principal Investigator, currently numbering well over 2000 patients recruited worldwide. She has a strong interest in patient-reported outcomes and has been the co-chair of an international effort through the OMERACT organization to develop a novel patient reported outcome measure. She currently serves as the Deputy Director of Telemedicine in the Division of Rheumatology and looks forward to utilizing this outreach effort to extend both clinical and research care in the future.
Professor Merrilee Needham is the current Foundation Chair in Neurology, a joint position between Fiona Stanley Hospital, Murdoch University and Notre Dame University Australia. She is a consultant neurologist at Fiona Stanley Hospital, the Director of Research for the South Metropolitan Health Service and the Group Leader, Myositis Discovery Program, Centre for Molecular Medicine & Innovative Therapeutics, Institute of Immunology and Infectious Diseases (IIID), Murdoch University. She was the Head of the Neurology unit at Fiona Stanley Hospital from 2015-1019. She is a board member of multiple organisations such as OMERACT, GCOM, ANN, AOMC, Clinical & Experimental Rheumatology and the World Muscle Society.
Senior Manager of Development and Fundraising Events - The Myositis Association
Shevelle Montgomery joined The Myositis Association in February 2021. Since joining The Myositis Association, Shevelle has worked closely with our Corporate Partners and helped to successfully launch TMA’s Signature Event, FUN FIT FLEX.
Shevelle has worked in Development and Fundraising in the healthcare industry for the past five years. Her experience has provided her success in fundraising, event planning, and volunteer management. Her previous role was Manager, Fundraising Events and Volunteer Engagement at the Crohn’s and Colitis Foundation in Maryland and Southern Delaware. Prior to this role, Shevelle worked in Annual Giving at the University of Maryland School of Medicine.
Patient and Family Advisory Council Member - The Myositis Association
For the past 46 years, Kent Yunker has been employed at the family business (which designs, creates and installs retail graphics for national clients). Kent was diagnosed with IBM in June of 2018 (although he likely had it as early as 2016). The progression has been significant these past 2 years. Not only is he a TMA member, but he also serves on the TMA Patient and Family Advisory Council. He and his wife Janis currently live in Lake Geneva, WI (about an hour north of Chicago). Their passions and hobbies include traveling, cooking, art, entertaining, loving on their 4-legged children and enjoying their new home!
Washington University School of Medicine
Conrad “Chris” Weihl, MD, PhD is a professor of neurology at Washington University School of Medicine in St. Louis. He serves as board chair of TMA’s Medical Advisor Board. In addition to caring for patients with myositis, he has a particular interest in understanding the pathogenesis of these enigmatic diseases.
Support Group Leader - The Myositis Association
Shawna Nielsen, has been a registered nurse (BSN) for 36 years and a myositis patient with DM for over 24 years. She teaches patient advocacy to nurses through Independent RN Patient Advocates in Tucson AZ. She is a Co-Leader for the TMA Northern California Keep In Touch support group as well as manages two Facebook support groups related to myositis. Shawna is passionate about the science and medical advances in myositis research and care. Her goal is for others to not suffer as she did early on. Shawna is now thriving with myositis and enjoys cooking, hiking and taking bird photos.