Tentative Agenda

Thursday, September 5
10:00 am          Registration Opens
10:00 am           Visit with Exhibitors
12:30 pm          Welcome and TMA Year in Review
                            John McClun, TMA Board of Directors, Chair
                           Mary McGowan, TMA Executive Director

1:45 pm            Get Acquainted Sessions

  • IBM (last name begins with A-L)
  • IBM (last name begins with M-Z)
  • PM and NM
  • DM
  • Antisynthetase Syndrome (ASyS)
  • IBM Care Partners
  • PM/DM/NM/ASyS Care Partners

3:00 pm           Keynote Address  
“Living with Invisible Chronic Illness” –  Mary E. Siegel, PhD
4:15 pm           Afternoon Breakout Sessions

Myositis 101 for IBM 
Thomas Lloyd, MD, PhD, Neurologist

Johns Hopkins Myositis Center
TMA Medical Advisory Board
Inclusion body myositis is different from the other inflammatory myopathies. This session provides the basics specifically for those who have IBM, including a glimpse into what to expect down the road. For those new to IBM and their care partners. (This presentation repeats on Friday at 7am.)

Myositis 101 for DM/PM/NM/ASyS
Steven Ytterberg, MD, Rheumatologist
Mayo Clinic Rochester
TMA Medical Advisory Board
Liaison to the Board of Directors
Whether you’re newly diagnosed, need a refresher, or are a family member trying to understand what’s happening to your loved one, this session covers the basics of myositis diseases, diagnosis, and management. For those new to DM, PM, NM, and antisynthetase syndrome and their care partners. (This presentation repeats on Friday at 7am.)

Classroom intro to aquatic therapy
Mickey Baron, RPT
Exercise in the water is often easier for those with myositis. This classroom introduction will help you understand the multiple benefits of aquatic therapy and prepare for upcoming sessions in the pool. For all patients.

Diagnosing myositis
Marianne de Visser, MD, Neurologist
Professor, University of Amsterdam, Netherlands
TMA Medical Advisory Board & Nominating Commitee Chair
Diagnosing myositis diseases is often a challenge. Learn 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. For all patients and care partners.

Exercise is medicine
Helene Alexanderson, PhD, RPT, Rehabilitation Specialist
Karolinska University, Stockholm, Sweden
TMA Medical Advisory Board

Tae Hwan Chung, MD, Physiatrist
Johns Hopkins Myositis Center
TMA Medical Advisory Board
Research has shown that exercise works to reduce inflammation and improve strength for those with muscle disease. Learn why exercise is sometimes the best medicine from two of the experts who pioneered this research. For all patients and their care partners.

Learning how to craft your advocacy story
John Capecci
Stories, particularly personal stories shared by the individuals who experience them, have the ability to engage and affect listeners in compelling ways. Telling your story is the best way to raise awareness for myositis in the world, and it’s one way you can advocate for and motivate change. This session will introduce best practices of persuasive communication and the fundamentals of storytelling. For everyone. (This presentation repeats on Friday at 9:30am.)

Fundraising training 
Tricha Shivas, Director of Development and Strategic Partnerships
The Myositis Association
Want to run a fun fundraising event in your local community to raise awareness on myositis? This session provides important tips on how to plan for a successful and engaging event. For everyone.

6:00 pm            Wine & Cheese Reception – Show Your Stripes – Adrain Walker, Pianist
7:00 pm           Evening open discussion sessions
We have set aside this unprogrammed time for participants to gather for an open discussion with others who share your condition. This can be a time to share tips and suggestions for living with myositis. It can also be a time to socialize.

  • Open discussion IBM
  • Open discussion PM/NM
  • Open discussion DM
  • Open discussion ASyS
  • Open discussion IBM Care Partners
  • Open discussion PM/DM/NM/ASyS Care Partners

Friday, September 6
7:00 am            Early-bird Breakout Sessions

Myositis 101 for DM/PM/NM/ASys 
Steven Ytterberg, MD, Rheumatologist
Mayo Clinic Rochester
TMA Medical Advisory Board
Liaison to the Board of Directors
Whether you’re newly diagnosed, need a refresher, or are a family member trying to understand what’s happening to your loved one, this session covers the basics of myositis diseases, diagnosis, and management. For those new to DM, PM, NM, and antisynthetase syndrome and their care partners. (This presentation repeats on Thursday at 4:15pm.)

Coping with steriods 
Mazen Dimachkie, MD, Neurologist
University of Kansas Medical Center
TMA Medical 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. This session provides an overview of the side effects and their significance, then discuss ways they can be controlled and managed. For patients taking steroid medications and their care partners. (This presentation repeats on Friday at 4pm.)

Focus on dermatomyositis 
Floranne Ernste, MD, Rheumatologist
Mayo Clinic Rochester
TMA Medical Advisory Board
This session focuses on dermatomyositis: the signs and symptoms, diagnosis, and disease management specific to this form of myositis. It will also discuss some of the distinct forms of DM, including DM without a rash and DM without muscle weakness. For DM patients and their care partners.

New research developments for IBM 
Jens Schmidt, MD, Neurologist
University Medical Center Gottingen
TMA Medical Advisory Board
A lot of mystery still surrounds the disease process, progression, and potential treatment for IBM. This neurology researcher highlights some recent research findings that help to better understand the disease and how to best tackle it in the future. For those with IBM and their care partners. (This presentation repeats Saturday at 2:30pm.)

Myositis 101 for IBM 
Thomas Lloyd, MD, PhD, Neurologist
John Hopkins Myositis Center
TMA Medical Advisory Board
Inclusion body myositis is different from the other inflammatory myopathies. This session provides the basics specifically for those who have IBM, including a glimpse into what to expect down the road. For those new to IBM and their care partners. (This presentation epeats on Thursday at 4:15pm.)

Exercise for all 
Helene Alexanderson, PhD, RPT, Rehabilitation Specialist
Karolinska University, Stockholm, Sweden
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 talks about and demonstrates exercises that can be used by all myositis patients, whether or not you currently engage in an exercise program. For all patients.

Myositis doesn’t stop my life (panel) 
Moderator: TBA
Speakers: Bitsy Anderson, Support Group Leader
John McClun, TMA Board of Directors, Chair
Chris Dotur, TMA Board of Directors
A diagnosis of IBM does not have to change everything in your life. In this presentation,   unstoppable IBM patients share their stories about how they continue to enjoy life and check off the items on their bucket list, despite the challenges of muscle weakness, fatigue, and pain. For everyone.

8:15 am            Breakfast – seating by region

Kristy Lacroix, Wheel Chair Escapes – Accessible Travel
Do you want to fly down a zipline or scuba dive in the Caribbean or swim with the dolphins? Do want to travel to Europe or go on a cruise? See our National Parks? Remember, you will never know, if you do not ask. You will not do, if you do not try. Kristy Lacroix from Wheelchair Escapes has over 25 years of experience in planning and leading travel experiences for those with disabilities. She will provide tips for how to travel successfully. For everyone. 

9:30 am
             Morning Breakout Sessions (90- minute session)

Learning how to craft your advocacy story 
John Capecci
Stories, particularly personal stories shared by the individuals who experience them, have the ability to engage and affect listeners in compelling ways. Telling your story is the best way to raise awareness for myositis in the world, and it’s one way you can advocate for and motivate change. This session will introduce best practices of persuasive communication and the fundamentals of storytelling. For everyone. (This presentation repeats on Thursday at 4:15pm.)

Focus on women only:  A safe space to share 
Megan McGowan, OTRL/L
Johns Hopkins Myositis Center
Women who live with a chronic disease often experience unique challenges that are difficult to discuss with partners or friends. This will be an open sharing session to allow women with myositis to connect with each other and talk in a safe space about challenges they face as women. The session may include issues of coping with the illness, intimacy, personal hygiene, relationships, and other topics that are important to or unique to women. For women with myositis.

Focus on men only:  A safe space to share 
Jim Ayres, PhD, LP
Men who live with a disabling disease often experience unique challenges that are difficult to discuss with partners or friends. This will be an open sharing session to allow men with myositis to connect with each other and talk in a safe space about challenges they face as men. The session may include issues of coping with the illness, intimacy and relationships, independence, control, work, and other topics that are important to or unique to men. For men with myositis.

Focus on myositis 20-40 year olds 
Katie Lamach, MSW
Catholic Social Services of Montana
A diagnosis of myositis can be challenging at any age, but younger people living with myositis often experience unique challenges that are difficult to discuss with partners or friends. This will be an open sharing session to allow myositis patients between the ages of 20 and 40 to connect with each other and talk in a safe space about the challenges they may face in careers, relationships, intimacy, coping with emotions, decisions about having children, parenting, and other topics that are important to or unique to younger people. For patients ages 20-40.

Focus on care partners only:  A safe space to share 
Sarah Gavin, LCSW
Family Means
Patients aren’t the only ones affected by a diagnosis of a chronic, disabling disease. Those who live and care for the patients also face unique challenges that may be difficult to discuss with partners or friends. This will be an open sharing session to allow myositis care partners to connect with each other and talk in a safe space about the challenges they may face, including coping with their own emotions, staying positive, maintaining their own health, juggling careers and caregiving, and other topics that are important to or unique to care partners. For care partners.

Spotlight on TMA Patient Advisory Council (panel) 
Laurie Boyer, TMA Board of Directors, Moderator
Members of TMA’s Women of Color Patient Advisory Council
Myositis diseases have a disproportionate impact on women of color. This session includes a panel of African American women who served as advisors during TMA’s Women of Color and Myositis campaign for Myositis Awareness Month this year. They will discuss the unique ways their disease affects them and how they manage in the face of the challenges. For everyone.

11:30 am          Mid-morning Breakout Sessions

Advocacy training 
Moderator: Laurie Boyer, TMA Board of Directors
Speakers: Kristen Angel, Associate Director of Advocacy, National Organization for Rare Disorders
Maria Null, Community Engagement Liaison, NORD Minnesota Rare Action Network
Learn about how you can become an advocate at the local and national level from TMA’s partner National Organization for Rare Disorders. Learn about rare disease legislative priorities, including advancing research funding, raising disease awareness, ensuring treatment access and affordability, and strengthening the drug development process. For everyone.

Adaptive living through technology
Amy Perron, Minnesota STAR Program
Assistive technology can make a big difference in how those with disabilities navigate the world. Learn about devices and resources that can make your life easier with myositis. For everyone.

Are you interested in becoming a Support Group leader? 
Marianne Moyer, TMA Support Group Leader
LaDonna Johnson, Member Services Manager, The Myositis Association
Do you want to help create a supportive community in your local area for those living with myositis? Come learn about TMA’s Support Group Program. A long-time successful TMA Support Group leader will help you learn about the training and support tools that TMA has in place to make it easy to get a group up and running in your community. For everyone.

Accessing VA benefits for veterans 
Moderator: John McClun, TMA Board of Directors – Chair
Speaker: Neil Doyle, Director of Hennepin County Veterans Service Office, Minnesota
Many TMA members are veterans who are eligible for services at the Veterans Administration. Too often, though they don’t know what services are available or how to access them. This panel offers insight and guidance into acquiring the services you need from experienced vets. For veterans who have myositis.

Nutrition for autoimmune diseases 
Jacilyn Mikels, ARNP, Family Nurse Practitioner
“You are what you eat” and it does have an impact on your health and well-being. A board-certified family nurse practitioner and health and nutritional coach discusses the influence diet can have on inflammation and how what you put into your body does matter. For everyone. (This session repeats on Saturday at 7am.)

Make your life work for you:  Sharing your favorite strategies and devices 
Megan McGowan, OTR/L
Johns Hopkins Myositis Center
Independence is the goal of this session. Participants are invited to bring or share strategies and devices they use to help them maintain their independence during their daily living. It will be facilitated by an occupational therapist from the Johns Hopkins Myositis Center who will also share her insights on daily living aides and unique/alternative exercise equipment on the market. For everyone.

Caring for care partners (panel) 
Moderator: Jeff Autrey, TMA Board of Directors
Speakers: Grace Whiting, JD, President and CEO, National Alliance for Caregiving
Jenny West, Community Educator, Family Means
Nichole Goble, Program Coordinator, Caregiver Action Network
Caring for a loved one with a chronic, disabling condition is hard work that is often underappreciated. This session with describe the national scope of caregiving policy and research, what social services and support resources are available and how to get them, and practical tips for care partners. For care partners.

Aquatic exercise in the pool for those with IBM 
Mickey Baron, RPT
Cool off in the pool and have fun with a group of patients as you learn some new moves for exercising in water that you can continue on your own when you get back home. No aquatics experience is necessary. Equipment will be provided. Wear your swimsuit. For IBM patients at all levels of ability.

12:45 pm         Lunch
Clinical Trials
This session offers 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. Learn about the latest information on current myositis studies being conducted by Corbus Pharmaceuticals, Orphazyme, and CSL Behring. For everyone.

2:30 pm           Afternoon Breakout Sessions

Myositis and heart disease
Louise Pyndt Diederichsen, MD
Myositis are systemic diseases and as such they might affect other organs besides the skeletal muscles. Heart involvement, including the blood vessels and the heart itself, might be affected by myositis, which can lead to heart rythm disorders and disturbed heart function. Early detection can prevent development of heart disease. For everyone.

When myositis makes it hard to swallow 
Jessica Gregor, MS CCC-SLP, BCS-S
Speech Pathology Cleveland Clinic, Weston, FL
As many as 30% of myositis patients will develop weakness in the muscles of the throat that makes it difficult to swallowing. This presentation will cover a variety of topics, including how normal swallowing works, how myositis changes swallow changes normal swallowing function, why swallowing problems occur in myositis, signs or symptoms of swallowing difficulties, how swallowing is evaluated, management of swallowing difficulties, and interventions available. For those who may have dysphagia and their care partners.

Find the doctor you can trust and trust the doctor you find                        Ashley Freeman, MPH
Manager, Stakeholder Engagement and Outreach
National Patient Advocacy Foundation
Healthy relationships are built through having trust and friendship. The importance of these factors is frequently overlooked when developing a relationship with your physician. The goal of this session is to empower and equip you with the tools to communicate your needs and expectations to your health care team that fosters shared decision-making and builds a community demand for patient-centered care. For everyone.

Gut microbiome and autoimmune disease 
Jacilyn Mikels, ARNP, Family Nurse Practitioner
Hippocrates, the father of modern medicine, reportedly said, “All disease begins in the gut.” Research continues to confirm the importance of the gut microbiome and its role in affecting autoimmune diseases, like myositis, positively and negatively. This session will breakdown the medical jargon to understand the true meaning of “Follow Your Gut.” For everyone.

Staying resilient as a care partner 
Janet Edmunson, MEd, President, JME Insight
When your new normal as a care partner becomes more challenging than you ever dreamed possible, it’s time to find out how to build your resilience. In this session, care partners can explore how to flip the negativity in your daily frustrations, build resilience so you can bounce back from setbacks and, in the process, still find meaning and the gifts in your adversity. You’ll walk away with some practical tools and skills to help you     build your resilience and positivity. For care partners.

Pain management for patients with myositis
Yasser Salem, PT, MS, PhD
University of North Texas Health Sciences Center
Pain can be an everyday part of myositis, but it doesn’t have to rule your life. In this session, a professor of physical therapy outlines the causes of pain and their impact on quality of life. Non-drug treatment strategies will be discussed, including examples of exercises that can help manage the pain and thus improve your quality of life. For patients experiencing pain and their care partners.

Insurance denial doesn’t mean defeat (panel) 
Moderator: David Mochel, TMA Board of Directors
Speakers: Jennifer Lim, Director of Patient Support Services, UBC Pharmaceutical Support
Pat Jolley, RN, Director of Clinical Initiatives, Patient Advocate Foundation
Trying to get health insurance coverage for the medications and services your doctor has prescribed can fraught with roadblocks. This panel of experts will help you understand coverage limitations, including preauthorization, formulary status, tier placement, and step therapy; identify steps you can take for overcoming these challenges; and offer insight into patient assistance programs that help you cover co-pays and deductibles. For everyone.

Aquatic exercise in the pool for all 
Mickey Baron, RPT
Cool off in the pool and have fun with a group of patients as you learn some new moves for exercising in water that you can continue on your own when you get back home. No aquatics experience is necessary. Equipment will be provided. Wear your swimsuit. For all patients at all levels of ability.

4:00 pm           Late-afternoon Breakout Sessions

Focus on polymyositis 
Wael Najib Jarjour, MD, Rheumatologist
The Ohio State University Wexner Medical Center
TMA Medical Advisory Board
This session focuses on polymyositis: the signs and symptoms, diagnosis, and disease management specific to this form of myositis. It will also discuss some new developments in the understanding of polymyositis and why patients are often misdiagnosed. For PM patients and their care partners.

Coping with steroids 
Mazen Dimachkie, MD, Neurologist
University of Kansas Medical Center
TMA Medical 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. This session provides an overview of the side effects and their significance, then discuss ways they can be controlled and managed. For patients taking steroid medications and their care partners. (This presentation repeats on Friday at 7am.)

Exercise for those who already exercise
Helene Alexanderson, PhD, RPT, Rehabilitation Specialist
Karolinska University, Stockholm, Sweden
TMA Medical Advisory Board
Myositis patients who already have an exercise routine can learn some new moves to improve your workout and bring added relief from symptoms. Patients with all forms of the disease can benefit from these guidelines and examples from the world’s leading expert in exercise for myositis. For myositis patients who already exercise.

Clinical features and progession of IBM 
Namita Goyal, MD, Neurologist
University of California, Irvine
TMA Medical Advisory Board
Myositis is often a challenge to diagnose, sometimes taking years to distinguish from other disorders. This is especially true for patients with sIBM, many of whom say they suspected something was wrong a decade or more before they were diagnosed. This session will discuss the signs and symptoms of IBM and the course this disease usually takes. For those with sIBM and their care partners.

Hand exercise for those with myositis 
Malin Regardt, PhD, Rehabilitation Specialist
Karolinska University, Stockholm, Sweden
TMA Medical Advisory Board
All myositis patients can benefit from exercises that focus on the hands. In this session, led by the world’s leading expert on hand exercise for myositis, participants can learn guidelines and examples of exercises for strengthening hand muscles. Distinctions, when necessary, will be made between movements for IBM and those for other myositis patients. For all patients and their care partners.

Focus on women of color and myositis 
Sonye Danoff, MD, PhD, Pulmonologist
John Hopkins Myositis Center
TMA Medical Advisory Board
TMA’s Women of Color and Myositis campaign during Myositis Awareness Month pointed out how myositis diseases disproportionately affect this segment of the population. This session discusses the range of issues that affect women of color more severely, including antisynthetase and interstitial lung disease. For everyone.

Focus on amyopathic dermatomyositis 
Ruth Ann Vleugels, MD, MPH, Dermatologist
Brigham and Women’s Hosptial, Harvard University
TMA Medical Advisory Board
People who have the skin disease of myositis without the muscle symptoms often find themselves in a difficult diagnostic situation. Do they really have myositis if they have all   of the itchy, painful rash but none of the weakness, fatigue, and muscle pain? This myositis expert helps tease out the differences between DM and ADM and considerations specific to those without muscle disease. For patients with ADM and their care partners.

Aquatic exercise in the pool for patients and care partners 
Mickey Baron, RPT
This in-pool session will give patients and care partners the chance to practice together some new moves for exercising in water that you can continue on your own when you get back home. No aquatics experience is necessary. Equipment will be provided. Wear your swimsuit. For all patients and care partners at all levels of ability.

5:15 pm          Self-care sessions
Feel Good Friday Night:  An Evening of Self Care
We know this conference can get pretty heavy with all the information there is to absorb, and that can be stressful. That’s why we’ve built in this break to help you experience some healthy down time. This evening is for everyone!

Mindfulness meditation 
LaDonna Johnson, Member Services Manager
The Myositis Association
Mindfulness is the process of bringing one’s attention to the present moment. Mindfulness meditation is used to reduce stress, anxiety, depression, and even pain. Join this experienced practitioner for a relaxing respite in the now.

Himalayan singing bowl therapist 
Krisin Elam, Sound Therapist and Health Coach
Sunu Wellness
Sound healing is a complementary practice using various instruments to invite the body to return to its natural state of harmonious resonance. In this session, a certified Atma Buti Sound Healing Practitioner offers a sound healing session to help participants release tension and find healing balance.

The power of positive for self-care 
Elisa Glass
Life is full of choices. Can you choose to be positive, rather than focus on negative circumstances beyond your control? This session will help participants understand how a positive frame of mind can help you feel not only happier but healthier too.

Service animals 
Lois Bauer and Kathleen Newbern
Canine Companions
Service dogs can change the lives of people with physical challenges by helping with everything from opening doors to sounding the alarm in an emergency. This session features the organization Canine Companions for Independence. A puppy-in-training will bring its trainer to talk about the process of preparing dogs to be assistance animals, and a care partner for an IBM patient will discuss her family’s experience with a CCI assistance dog.

Saturday, September 7
7:00 am          Early-bird Breakout Sessions

Myositis and overlapping autoimmune diseases 
Rossitza Chickova, MD
Associate Professor of Medicine, University of South Florida
Having one autoimmune condition is no guarantee that you won’t also acquire another. In fact, the opposite is too often the case. If you have symptoms in addition to those related to myositis, you may have overlap syndrome. This presentation will help you figure out what might be going on and what to do about it. For everyone.

Nutrition for autoimmune diseases 
Jacilyn Mikels, ARNP, Family Nurse Practitioner
“You are what you eat” and it does have an impact on your health and well-being. A board-certified family nurse practitioner and health and nutritional coach discusses the influence diet can have on inflammation and how what you put into your body does    matter. For everyone. (This session repeats on Friday at 11:30am.)

Specialty pharmacies and accessing medications (panel) 
Moderator: Tricha Shivas, Director of Development and Strategic Partnerships
The Myositis Association
Speakers: NuFactor, BriovaRX, CSI Pharmacy
Intravenous Immunoglobulin (IVIg) is a frequently prescribed treatment for many myositis diseases. This session will help you understand what IVIg is and how it is used for patients with myositis. You will also learn about the tools that specialty pharmacies can provide patients to address the access challenges many patients face when trying to use IVIG medications. For everyone.

Blood flow-restricted exercise for IBM
Louise Pyndt Diederichsen, MD, PhD
Odense University Hospital, Odense, Denmark
As the current medical treatments have proven largely ineffective for sIBM patients, there is a strong need for identifying alternative treatment methods for these patients. Hear from the principal investigator of a new study that has found a positive effect of low-intensity strength training with simultaneous partial Blood Flow Restriction (BFR-training). For those with IBM. (This session repeats Saturday at 2:30pm.)

8:15 am           Breakfast
NCATS

9:30 am
          Reports from TMA’s Medical Advisory Board
TMA is fortunate to have 23 of the world’s most respected myositis experts serving as medical advisors. In this general session, you can meet them, ask questions, and learn what research they’re pursuing. For everyone.

11:30 am
        Mid-morning Breakout Sessions (Q&A)
Disease-specific Q&A – These sessions offer patients the chance to discuss their symptoms, treatments, disease course, and more with myositis experts. There’s a session for everyone.

Q & A antisynthetase syndrome 
Sonye Danoff, MD, PhD, Pulmonologist
Johns Hopkins Myositis Center
TMA Medical Advisory Board

Q & A polymyositis 
Floranne Ernste, MD, Rheumatologist
Mayo Clinic Roschester
TMA Medical Advisory Board

Q & A necrotizing myopathy 
Marianne de Visser, MD, Neurologist
Professor, University of Amsterdam, Netherlands
TMA Medical Advisory Board & Nominating Commitee Chair

Q & A dermatomyositis 
Ann Reed, MD, Pediatric Rheumatologist
Duke University Medical Center
TMA Medical Advisory Board

Ruth Ann Vleugels, MD, MPH, Dermatologist
Brigham and Women’s Hospital, Harvard University
TMA Medical Advisory Board

Q & A IBM 
Thomas Lloyd, MD, PhD, Neurologist
John Hopkins University School of Medicine
TMA Medical Advisory Board

Olivier Benveniste, MD, Internal Medicine
Hôpital Pitie-Salpetriere, Paris, France
TMA Medical Advisory Board

Q & A on exercise 
Helene Alexanderson, PhD, RPT, Rehabilitation Specialist
Karolinska University, Stockholm, Sweden
TMA Medical Advisory Board
Tae Hwan Chung, MD, Physiatrist
John Hopkins Myositis Center
TMA Medical Advisory Board

Practical guidance for care partners 
Malin Regardt, PhD, OT, Rehabilitation Specialist
Karolinska University, Stockholm, Sweden
TMA Medical Advisory Board

Ruben Pagkatipunan, Jr. PT, DPT, OCS
Johns Hopkins Myositis Center
Caring for someone who is physically disabled can be hard work. This session, led by two rehabailitation specialists, will demonstrate a number of techniques that will make life easier for care partners, providing new tools for assisting with lifting, bathing, and other activities of daily living without injury to themselves or their loved ones. For care partners.

12:45 pm        Lunch
Adaptive  Clothing – Target Corporation
Moderator: Chris Dotur, TMA Board of Directors
Mari Anderson, Principal Technical Designer, Target
Stacey Monsen, Senior Product Designer, Target
Amy Kightlinger, Director of Kids Technical Development, Target
Target has had great success with their adaptive clothing line for children called Cat & Jack. In this interactive session, you can learn about the successes and challenges in building a fashionable adaptive line and participate in an open discussion with Target designers about their move into the adult adaptive clothing.

2:30 pm         Afternoon Breakout Sessions

New research developments for IBM
Jens Schmidt, MD, Neurologist
University Medical Center Gottingen
TMA Medical Advisory Board
A lot of mystery still surrounds the disease process, progression, and potential treatment for IBM. This neurology researcher highlights some recent research findings that help to better understand the disease and how to best tackle it in the future. For those with IBM and their care partners. (This presentation repeats Friday at 7am.)

What rare disease patients need to know about clinical trials 
Perry Shieh, MD, PhD, Neurologist
University of California, Los Angeles
TMA Medical Advisory Board
Because myositis is such a rare disease, it’s important for all patients to consider participating in a clinical trial. This session will help you understand some of the confusing ideas involved in scientific research, such as double blinding, randomization, statistical significance, control groups, inclusion criteria, and disease registries. For all patients and their care partners.

Myositis autoantibodies 
Tahseen Mozaffar, MD, Neurologist
University of California, Irvine
TMA Medical Advisory Board
Recent research has discovered a whole collection of autoantibodies that are found only in patients with myositis. This session will help you understand what having these autoimmune factors in your blood can tell your doctor about your disease course and how they might influence the choice of various treatment options. For all patients and their care partners.

Exercise for DM/PM/NM new to exercise 
Helene Alexanderson, PhD, RPT, Rehabilitation Specialist
Karolinska University, Stockholm, Sweden
TMA Medical Advisory Board
Myositis patients who are just getting started with an exercise routine can hear how best to begin a workout program and learn guidelines and examples from the world’s leading expert in exercise for myositis. For DM/PM/NM/ASyS patients new to exercise.

Focus on necrotizing myopathy 
Andrew Mammen, MD, PhD, Neurologist
National Institute of Arthritis and Musculskeletal and Skin Disease – NIH
TMA Medical Advisory Board, Chair
Necrotizing myopathy is now recognized as another distinct form of myositis. Learn how NM is different from other forms of myositis and how it is best diagnosed and treated. For those who have or wonder if they have necrotizing myopathy and their care partners.

Minding your mental health 
Moderator: Gail Bayliss, TMA Board of Directors
Speakers: Sue Abderholden, MPH, Executive Director, National Alliance of Mental Illness Minnesota
Shannah Mulvihill, Executive Director, Mental Health Minnesota
Suzan Fischbein, LCSW, Hospital for Special Surgery
Whether you are 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 will help you understand the difference between sadness and more troubling symptoms of anxiety and depression. They will also discuss mental health resources and how to find them in your community. For everyone.

Blood flow-restricted exercise for IBM
Louise Pyndt Diederichsen, MD, PhD
Odense University Hosptial, Odense, Denmar
As the current medical treatments have proven largely ineffective for sIBM patients, there is a strong need for identifying alternative treatment methods for these patients. Hear from the principal investigator of a new study that has found a positive effect of low-intensity strength training with simultaneous partial Blood Flow Restriction (BFR-training). For those with IBM. (This session repeats Saturday at 2:30pm.)

3:45 pm         Late-afternoon Breakout Sessions

Exercise for IBM patients new to exercise 
Tae Hwan Chung, MD, Physiatrist
John Hopkins Myositis Center
TMA Medical Advisory Board
Exercise is one of the only treatments currently available for IBM. Those who are newly   inspired to start an exercise routine can hear how best to begin a workout program and learn guidelines and examples from one of the world’s leading experts in exercise for myositis. For IBM patients new to exercise.

Myositis medications and treatments 
Perry Shieh, MD, PhD, Neurologist
University of California, Los Angeles
TMA Medical Advisory Board
You might have more of a choice than you think in your treatment regimen. A myositis expert reviews the available medications, their side effects, and some questions to ask your doctor when determining which treatment might be right for you. For those with DM, PM, NM, and ASyS.

What causes IBM and therapies targeting these causes 
Conrad C. Weihl, MD, PhD, Neurologist
Washington University School of Medicine
TMA Medical Advisory Board – Research Committee Chair
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 reviews how these processes work in the muscles and how they relate to current and future therapies. For IBM patients and their care partners.

Focus on adults with juvenile myositis 
Ann Reed, MD, Pediatric Rheumatologist
Duke University Medical Center
TMA Medical Advisory Board
Adults who were diagnosed with myositis as a child are different from those who acquire the disease as adults. In this session, an expert on juvenile myositis discusses these differences and treatment considerations for adults with juvenile myositis. For adult JM patients and their care partners.

Myositis and cancer 
Andrew Mammen, MD, PhD, Neurologist
National Institute of Arthritis and Musculskeletal and Skin Disease – NIH
TMA Medical Advisory Board, Chair
Research has shown an association between myositis and malignancy, which is often referred to as cancer-associated myositis (CAM). This session discusses this association and the precautions that should be taken for the best outcome. Primarily for DM, PM, and NM patients and their care partners.

Myositis and lung diseases 
Sonye Danoff, MD, PhD, Pulmonologist
Johns Hopkins Myositis Center
TMA Medical Advisory Board
Interstitial lung disease is the most common non-musculoskeletal condition associated with myositis diseases. But all forms of myositis can be associated with lung problems, including pneumonia and poor ventilation because of weakness of the muscles of the chest and throat. In this session, a pulmonologist and myositis expert will discuss how the lungs are affected by myositis and how best to treat these conditions. For all patients and their care partners.

Where we stand in the search for a cure 
Rohit Aggarwal, MD, MS, Rheumatologist
University of Pittsburgh Myositis Center
In this session, a myositis researcher offers a historical perspective related to clinical trials and the progress we’ve made (and still need to make) on developing new therapies, reviews treatments currently available but not approved for myositis, and discusses treatments currently being tested for myositis indications. Primarily for DM, PM, and NM patients and their care partners.

Sunday, September 8
7:00 am        Early-bird Breakout Session

Getting started and sticking with an exercise plan
Helene Alexanderson, PhD, RPT, Rehabilitation Specialist
Karolinska University, Stockholm, Sweden
TMA Medical Advisory Board
Even with all the good intentions you feel during this conference, it’s not always easy to follow through on starting and maintaining an exercise routine. One of our physical therapy expert offer insight into how to keep those promises to yourself once you get back home. For everyone.

8:15 am         Breakfast
9:15 am         Meet the Board of Directors
10:15 am      Resilence, Hope and Living Life
11:15am       Closing Session – Mary McGowan, TMA Executive Director 
11:30 am       Conference Concludes