Our 2019 Annual Patient Conference brought myositis experts, researchers, doctors, patients, and care partners together to cover a variety of myositis topics in detail, explain new findings, and share personal experiences. If you weren’t able to make it (or if you’d like to relive a particular session), we invite you to download and view sessions from the conference below.
The downloadable presentations cover the following topics:
- TMA Updates
- Myositis Types and Progression
- Myositis and Other Diseases
- Medications and Treatment
- Exercise
- Nutrition
- Living With Myositis
- Care Partners
- Research
- Fundraising and Advocacy
TMA Updates
See what The Myositis Association has been up to over the past year, including reports from our executive director and Medical Advisory Board.
Welcome and TMA Year in Review
Presentors: Mary McGowan, TMA Executive Director, and John McClun, Chair of the TMA Board of Directors
Our fearless leaders welcomed conference attendees and walked through what The Myositis Association has been able to accomplish over the past year.
Reports from TMA’s Medical Advisory Board
Presentors: The Myositis Association Medical Advisory Board
TMA is fortunate to have 23 of the world’s most respected myositis experts serving as medical advisors. In this general presentation, they introduce themselves, answer questions, and talk about current research topics they’re pursuing.
Sessions Focusing on Women of Color and Myositis
Presentors: Laurie Boyer, member of the TMA Board of Directors, the members of TMA’s Women of Color Patient Advisory Council, and Sonye Danoff, MD, PhD, Pulmonologist at John Hopkins Myositis Center and member of the TMA Medical Advisory Board
Myositis diseases have a disproportionate impact on women of color. A panel of African American women served as advisors during TMA’s Women of Color and Myositis campaign for Myositis Awareness Month this year. They discussed the unique ways their disease affects them and the impact patients can have serving on a Patient Advisory Council.
A related session discussed the range of issues that affect women of color more severely, including antisynthetase and interstitial lung disease.
Myositis Types and Progression
Each presentation in this group tackles a specific type of myositis and its progression. The presentations were geared toward educating patients and their care partners.
Myositis 101 for IBM
Presentor: Thomas Lloyd, MD, PhD, Neurologist at Johns Hopkins Myositis Center and member of the TMA Medical Advisory Board
Get an introduction to inclusion body myositis (IBM). This session covered the basics of IBM, including a glimpse into what to expect down the road for those who’ve been recently diagnosed and their care partners.
Myositis 101 for DM/PM/NM/ASyS
Presentor: Steven Ytterberg, MD, Rheumatologist at Mayo Clinic Rochester, TMA Medical Advisory Board member, and Liaison to the Board of Directors
This session outlined the basics of myositis diseases, diagnosis, and management. The presentation is geared toward those new to dermatomyositis, polymyositis, necrotizing myopathy, and antisynthetase syndrome and their care partners.
Focus on Dermatomyositis
Presentor: Floranne Ernste, MD, Rheumatologist at the Mayo Clinic Rochester and member of TMA Medical Advisory Board
This session focused on dermatomyositis (DM). It covers the signs, symptoms, diagnosis, and disease management. It also discussed some of the distinct forms of DM, including DM without a rash and DM without muscle weakness.
Focus on Adults with Juvenile Myositis
Presentor: Ann Reed, MD, Pediatric Rheumatologist at Duke University Medical Center and member of TMA Medical Advisory Board
This session focused on adults who were diagnosed with juvenile myositis as children. An expert on juvenile myositis discussed the differences from patients diagnosed as adults and treatment considerations for adults with juvenile myositis.
Clinical Features and Progression of IBM
Presentor: Tahseen Mozaffar, MD, Neurologist at the University of California, Irvine and member of TMA Medical Advisory Board
Geared toward inclusion body myositis (IBM) patients and their care partners, this session discussed the signs and symptoms of IBM and the course this disease usually takes.
Myositis and Other Diseases
Each presentation in this group tackles a disease associated with myositis and the complications it can cause. The presentations were geared toward educating patients and their care partners.
Myositis and Heart Disease
Presentor: Louise Pyndt Diederichsen, MD
This session covered the risk factors of heart disease for myositis patients. Heart involvement, including the blood vessels and the heart itself, might be affected by myositis, which can lead to heart rhythm disorders and disturbed heart function. Learn how early detection can prevent heart disease.
Myositis and Lung Diseases
Presentor: Sonye Danoff, MD, PhD, Pulmonologist, Johns Hopkins Myositis Center, and TMA Medical Advisory Board member
Interstitial lung disease is the most common non-musculoskeletal condition associated with myositis diseases. In this session, a pulmonologist and myositis expert discussed how the lungs are affected by myositis and how best to treat these conditions.
Q&A on Antisynthetase Syndrome
Presentor: Sonye Danoff, MD, PhD, Pulmonologist, Johns Hopkins Myositis Center, and TMA Medical Advisory Board member
Participants to this session asked our specialist a wide range of questions about antisynthetase syndrome.
Myositis and Overlapping Autoimmune Diseases
Presentor: Rossitza Chickova, MD, Associate Professor of Medicine at University of South Florida
Having one autoimmune condition is no guarantee that you won’t also acquire another. If you have symptoms in addition to those related to myositis, you may have overlap syndrome. This presentation is meant to help patients and their care partners figure out what might be going on and what to do about it.
Medications and Treatment
The following presentations cover topics surrounding the medication and treatment of myositis.
Diagnosing Myositis
Presentor: Marianne de Visser, MD, Neurologist, Professor, University of Amsterdam, Netherlands, and TMA Medical Advisory Board & Nominating Committee Chair
Diagnosing myositis diseases is often a challenge. This session covered the process doctors go through when someone comes to them with muscle weakness and other symptoms, from examination to diagnostic testing and distinguishing myositis from other diseases.
Myositis Medications and Treatments
Presentor: Perry Shieh, MD, PhD, Neurologist, University of California, Los Angeles, and TMA Medical Advisory Board member
You might have more of a choice than you think in your treatment regimen. In this session, a myositis expert reviewed the available medications, their side effects, and some questions to ask your doctor when determining which treatment might be right for you.
What Causes IBM and Therapies Targeting These Causes
Presentor: Conrad C. Weihl, MD, PhD, Neurologist at Washington University School of Medicine and Research Committee Chair on TMA Medical Advisory Board
IBM is a challenge to understand and treat, because there appear to be two different underlying processes at work: inflammation and muscle degeneration. In this session, an IBM expert reviewed how these processes work in the muscles and how they relate to current and future therapies.
Specialty Pharmacies and Accessing Medications (Panel)
Moderated by Tricha Shivas, the Director of Development and Strategic Partnerships at The Myositis Association, the panel included speakers from NuFactor, BriovaRX, CSI Pharmacy, and Kabafusion.
Intravenous Immunoglobulin (IVIg) is a frequently prescribed treatment for many myositis diseases. This panel presentation explained what IVIg is and how it is used for patients with myositis. Learn about the tools that specialty pharmacies can provide patients to address the access challenges many patients face when trying to use IVIg medications.
Insurance Denial Doesn’t Mean Defeat (Panel)
Moderated by David Mochel, a member of TMA Board of Directors, the panel included Jennifer Lim, Director of Patient Support Services at UBC Pharmaceutical Support, and Pat Jolley, RN, Director of Clinical Initiatives at the Patient Advocate Foundation.
This panel of experts talked about coverage limitations, including preauthorization, formulary status, tier placement, and step therapy. They also identified steps you can take to overcome these challenges and offered insight into patient assistance programs that can help cover co-pays and deductibles.
Coping with Steroids
Presentor: Mazen Dimachkie, MD, Neurologist at University of Kansas Medical Center, and member of the TMA Advisory Board
Trying to manage the side effects of long-term, high-dose steroid (prednisone) therapy is one of the biggest challenges myositis patients face. Learn more about its side effects and ways myositis patients taking steroid medications can control and manage those side effects.
Exercise
Many myositis experts agree that exercise can be key to slowing the progression of myositis. Check out the presentations on myositis exercises.
Exercise is Medicine
Presentors: Helene Alexanderson, PhD, RPT, Rehabilitation Specialist at Karolinska University, Stockholm, Sweden and member of TMA Medical Advisory Board, and Tae Hwan Chung, MD, Physiatrist at Johns Hopkins Myositis Center and member of TMA Medical Advisory Board
Research has shown that exercise can reduce inflammation and improve strength for those with muscle diseases. This session explained why exercise is sometimes the best medicine from two of the experts who pioneered this research.
Exercise for All
Presentor: Helene Alexanderson, PhD, RPT, Rehabilitation Specialist at Karolinska University, Stockholm, Sweden, and member of TMA Medical Advisory Board
Exercise is one of the best ways to stay healthy, even when you have muscle disease. In this session, an expert in myositis and exercise talked about and demonstrated exercises that can be used by all myositis patients, whether or not you currently engage in an exercise program.
Exercise for Those Who Already Exercise
Presentor: Helene Alexanderson, PhD, RPT, Rehabilitation Specialist at Karolinska University, Stockholm, Sweden, and member of TMA Medical Advisory Board
In this presentation, myositis patients who already have an exercise routine learned new moves to improve their workout and bring added relief from symptoms. Patients with all forms of myositis can benefit from these guidelines and examples from a leading expert in exercise for myositis.
Hand Exercise for Those with Myositis
Presentor: Malin Regardt, PhD, Rehabilitation Specialist at Karolinska University, Stockholm, Sweden and member of TMA Medical Advisory Board
All myositis patients can benefit from exercises that focus on the hands. In this session, participants learned the guidelines and examples of exercises for strengthening hand muscles. Distinctions were made between movements for inclusion body myositis and those for other myositis patients.
Blood Flow-restricted Exercise for IBM
Presentor: Louise Pyndt Diederichsen, MD, PhD at Odense University Hospital, Odense, Denmark
As current medical treatments have proven largely ineffective for inclusion body myositis patients, there is a strong need for identifying alternative treatment methods. View this presentation from the principal investigator of a new study that found a positive effect of low-intensity strength training with simultaneous partial blood flow restriction (BFR-training).
Q&A on Exercise
Presentors: Helene Alexanderson, PhD, RPT, Rehabilitation Specialist at Karolinska University, Stockholm, Sweden, and member of TMA Medical Advisory Board, and Tae Hwan Chung, MD, Physiatrist at John Hopkins Myositis Center and member of TMA Medical Advisory Board
Participants to this session asked our specialists a wide range of questions about myositis and exercise.
Exercise for DM/PM/NM Patients New to Exercise
Presentor: Helene Alexanderson, PhD, RPT, Rehabilitation Specialist at Karolinska University, Stockholm, Sweden, and member of TMA Medical Advisory Board
Geared toward myositis patients who are just getting started with an exercise routine, this session covered how best to begin a workout program and outlined guidelines and examples from the world’s leading expert in exercise for myositis.
Exercise for IBM Patients New to Exercise
Presentor: Tae Hwan Chung, MD, Physiatrist at John Hopkins Myositis Center and member of TMA Medical Advisory Board
Exercise is one of the only treatments currently available for inclusion body myositis. Those newly inspired to start an exercise routine learned how best to begin a workout program and explored guidelines and examples from a leading expert in exercise for myositis.
Getting Started and Sticking with an Exercise Plan
Presentor: Helene Alexanderson, PhD, RPT, Rehabilitation Specialist at Karolinska University, Stockholm, Sweden, and member of TMA Medical Advisory Board
It’s not always easy to follow through on starting and maintaining an exercise routine. One of our physical therapy experts offered insights into how to keep those promises to yourself.
Nutrition
Nutrition has been known to have an effect on those with autoimmune diseases, such as myositis. See our presentations on nutrition and autoimmune diseases.
Nutrition for Autoimmune Diseases
Presentor: Jacilyn Mikels, ARNP, Family Nurse Practitioner
A board-certified family nurse practitioner and health and nutritional coach discussed the influence diet can have on inflammation and how what you put into your body does matter.
Gut Microbiome and Autoimmune Disease
Presentor: Jacilyn Mikels, ARNP, Family Nurse Practitioner
Research continues to confirm the importance of the gut microbiome and its role in affecting autoimmune diseases, like myositis, both positively and negatively. This session broke down medical jargon to explain the true meaning of “Follow Your Gut.”
Living With Myositis
Find presentations on living with myositis, including sessions on adaptive living and mental health.
Living with Invisible Chronic Illness (Keynote Address)
Presentor: Mary E. Siegel, PhD, co-author of the book Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness
People who suffer from chronic fatigue, chronic pain, and other difficult symptoms of myositis often endure not only the disease, but also the dismissive and negative reactions from others. In her keynote address at this year’s conference, Mary Siegel offered hope and coping strategies to those suffering from chronic illnesses like myositis, encouraging attendees to rethink how they view myositis and how to communicate that with their loved ones and doctors in a way that meets their needs.
Myositis Doesn’t Stop My Life (Panel)
Presentors: Bitsy Anderson, Support Group Leader; John McClun, Chair of TMA Board of Directors; and Chris Dotur, member of TMA Board of Directors
A diagnosis of IBM does not have to change everything in your life. In this presentation, unstoppable IBM patients shared their stories about how they continue to enjoy life and check off the items on their bucket lists, despite the challenges of muscle weakness, fatigue, and pain.
Adaptive Living Through Technology
Presentor: Amy Perron, Minnesota STAR Program
Assistive technology can make a big difference in how those with disabilities navigate the world. This session covered devices and resources that can make life easier for anyone with myositis.
Find the Doctor You Can Trust and Trust the Doctor You Find
Presentor: Ashley Freeman, MPH, Manager, Stakeholder Engagement and Outreach, National Patient Advocacy Foundation
Healthy relationships are built through trust. This session was designed to equip patients with the tools necessary to communicate your needs and expectations to your health care team in a way that fosters shared decision-making and patient-centered care.
Minding Your Mental Health (Panel)
Moderated by Gail Bayliss, member of TMA Board of Directors, the panel included speakers Sue Abderholden, MPH, Executive Director of the National Alliance of Mental Illness Minnesota, Shannah Mulvihill, Executive Director of Mental Health Minnesota, and Suzan Fischbein, LCSW, Hospital for Special Surgery
Whether you’re a patient, a care partner, or a family member of someone with myositis, trying to cope with a chronic disease can be challenging. In this session, mental health specialists explained the difference between sadness and more troubling symptoms of anxiety and depression. They also discussed mental health resources and how to find them in your community.
Watch the session recording or download the panelists’ presentations below.
Care Partners
While care partners were welcome at any session that applied to the myositis patient they care for, these sessions were specifically focused on the care partner’s role.
Staying Resilient as a Care Partner
Presentor: Janet Edmunson, MEd, President of JME Insight
When your new normal as a care partner becomes more challenging than you ever dreamed possible, it’s time to build resilience. In this session, care partners were able to explore how to flip the negativity in daily frustrations, build resilience to bounce back from setbacks, and find meaning and the gifts in your adversity. You’ll learn about practical tools and skills to help you build resilience and positivity.
Caring for Care Partners (Panel)
Moderated by Jeff Autrey, member of TMA Board of Directors, the panel included speakers Jenny West, Community Educator at Family Means, and Nichole Goble, Program Coordinator at Caregiver Action Network
Caring for a loved one with a chronic, disabling condition is hard work that is often underappreciated. This session described the national scope of caregiving policy and research, what social services and support resources are available and how to get them, including practical tips for care partners.
Practical Guidance for Care Partners
Presentors: Malin Regardt, PhD, OT, Rehabilitation Specialist at Karolinska University, Stockholm, Sweden, and member of TMA Medical Advisory Board, and Ruben Pagkatipunan, Jr. PT, DPT, OCS at Johns Hopkins Myositis Center
Caring for someone who is physically disabled can be hard work. This session, led by two rehabilitation specialists, demonstrated techniques to make life easier for care partners, providing new tools for assisting with lifting, bathing, and other activities of daily life without injury to themselves or their loved ones.
Research
Download presentation detailing new research developments and learn more about the search for a cure for myositis.
New Research Developments for IBM
Presentor: Jens Schmidt, MD, Neurologist at University Medical Center Gottingen and member of TMA Medical Advisory Board
A lot of mystery still surrounds the disease process, progression, and potential treatment for inclusion body myositis. A neurology researcher highlighted some recent research findings that help to better understand the disease and how to best tackle it in the future.
Clinical Trials
This session gave an update on myositis clinical trials from the pharmaceutical company perspective. Learn how pharmaceutical companies choose their research projects, identify research sites, and coordinate with researchers and patients. It also covers the latest information on current myositis studies being conducted by Mallinkrodt Pharmaceuticals, Corbus Pharmaceuticals, Orphazyme, RA Pharmaceuticals and CSL Behring.
What Rare Disease Patients Need to Know About Clinical Trials
Presentor: Perry Shieh, MD, PhD, Neurologist, University of California, Los Angeles, and TMA Medical Advisory Board member
Because myositis is such a rare disease, it’s important for patients to consider participating in a clinical trial. Participants of this session learned more about some of the confusing ideas involved in scientific research, such as double blinding, randomization, statistical significance, control groups, inclusion criteria, and disease registries.
Where We Stand in the Search for a Cure
Presentor: Rohit Aggarwal, MD, MS, Rheumatologist at University of Pittsburgh Myositis Center
In this session, a myositis researcher offered a historical perspective related to clinical trials and the progress we’ve made (and still need to make) on developing new therapies. He also reviewed treatments currently available but not approved for myositis and discussed treatments currently being tested for myositis indications. The presentation primarily focuses on dermatomyositis, polymyositis, and necrotizing myopathies.
Fundraising and Advocacy
Will you help The Myositis Association fundraise to increase awareness and advocate for new treatments? Download the presentations to learn how you can help.
Fundraising Training
Presentor: Tricha Shivas, Director of Development and Strategic Partnerships at The Myositis Association
Want to host a fun fundraising event in your local community to raise awareness for myositis? This session gave important tips on how to plan for a successful and engaging event.
Advocacy Training
Moderated by Laurie Boyer, member of TMA Board of Directors, the panel included Kristen Angel, Associate Director of Advocacy at National Organization for Rare Disorders, and Maria Null, Community Engagement Liaison at NORD Minnesota Rare Action Network
See how you can become an advocate at the local and national level from TMA’s partner National Organization for Rare Disorders. This panel session covered rare disease legislative priorities, including advancing research funding, raising disease awareness, ensuring treatment access and affordability, and strengthening the drug development process.
Each year, our annual conference results in a wealth of knowledge and support from myositis experts and patients from around the world. If you or a loved one has been diagnosed, consider joining us at our next conference to take in these sessions and more in person.