Tentative Agenda

**This agenda is based on Eastern Time**

Friday, September 11, 2020 

11:00 am Exhibit Hall Opens
12:00 pm Opening Address – Peter Frampton
1:15 pm Breakout Sessions

Myositis 101 
Steven Ytterberg, MD  
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 will cover the basics of myositis diseases, diagnosis, and management.

Physical Therapy for advanced IBM patients and Caregivers 
Helene Alexanderson, MD 
As IBM advances, there are a number of ways that patients can remain as active and independent as possible. This session will guide patients and caregivers through safe and effective strategies for preserving strength and accommodating muscle weakness. 

Dealing with the VA Maze
John McClun, TMA Board of Directors 
Many TMA members are veterans who are eligible for services at the Veterans Administration (VA).  Too often, though, they don’t know what services are available or how to access them.  This session will offer insight and guidance into acquiring the services you need from an experienced veteran.

The PRESIDIO Study: A Clinical Trial of the Immunoproteasome Inhibitor, KZR-616 for the Treatment of PM and DM
N
oreen Roth Henig, MD, Kezar Life Sciences
MK Farmer, MD, Kezar Life Sciences
Celia Economides, Kezar Life Sciences

2:45 pm Network Sessions – By Disease
We promised collaboration, socialization and education! Here’s your opportunity to socialize and connect with other attendees in a more intimate setting. Take advantage of this time to introduce yourself and connect with others who share the same diagnoses and experiences as you.

  • IBM (By last name)
  • PM/NM (By last name)
  • DM/ASs (By last name)
  • Care Partner

5:00 pm Feel Good Friday – Breakout Sessions

Intimacy
Dr. Lee Phillips, Ed.D, LCSW, CSAC, CST, CSCT  
This session will explore how to maintain intimacy with your partner while confronting the challenges of physical changes to your body and changes in the everyday ways you interact with your partner that come with chronic illness.  This session will explore communication tools and engagement techniques for partners. 

Cannabis/CBD know the facts
Ellen Smith 
There is a good chance you’ve heard a friend share his or her story about the wonders on medical marijuana and CBD.  While the therapy is widely available, the science is still not clear.  This session will help you know the facts.  

Dating with a rare chronic disease
Melissa Marconi, LMSW, TMA Support Group Leader 
How are you adjusting to your life as a myositis patient?  Don’t believe you can still find love?  When is it a good time to tell your partner about your rare disease? If you find yourself wondering about this, you’ll find comfort and guidance in this inspiring session. 

How to Pace Yourself: An Exploration of Spoon Theory and How to Manage your Expectations while Managing your Chronic Illness 
Marianne Moyer, TMA Support Group Leader
This session will explore the tenets of Spoon Theory, a disability metaphor that explains the need for patients to balance mental and physical energy. We will provide suggestions on how to set realistic goals and pace oneself to meet daily needs and responsibilities while managing your chronic illness. 

DM including ILD and JDM Update
Floranne Ernste, MD

This session, for those with both adult and juvenile forms of dermatomyositis, will discuss updates in what we now know about DM, including promising research and the latest in treatment for the interstitial lung disease that accompanies some forms of DM. 

6:00 pm First day concludes

Saturday, September 12, 2020

11:00 am Exhibit Halls Opens
11:30 am Medical Advisory Board – Update on disease specific research and open Q & A
TMA is fortunate to have 21 of the world’s most respected myositis experts serving as medical advisors. 

IBM Update
Moderator: Dr. Thomas Lloyd
Panelist: Dr. Namita Goyal, Dr. Tahseen Mozaffar, Dr. Jens Schmidt and Dr. Conrad Weihl

This session offers the chance to discuss your symptoms, treatments, disease course, and more with myositis experts.

DM including ILD and JDM
Moderator: Dr. Floranne Ernste
Panelist: Dr. Sonya Danoff, Dr. Victoria Werth, Dr. Adam Schiffenbauer and Dr. Lesley Ann Saketkoo

This session offers the chance to discuss your symptoms, treatments, disease course, and more with myositis experts.

PM/NM Update
Moderator: Dr. Steven Ytterberg
Panelist: Dr. Erik Ensrud, Dr. Wael Najib Jarjour, Dr. Olivier Benveniste and Janine Lamb

This session offers the chance to discuss your symptoms, treatments, disease course, and more with myositis experts.

General: Update on clinical trials in PM and DM
Moderator: Dr. Rohit Aggarwal
Panelist: Dr. Marianne de Visser, Dr. Tae Hwan Chung, Dr. Kanneboyina Nagaraju, Perry Shieh, MD, PhD and Dr. Malin Regardt

This session offers the chance to discuss your symptoms, treatments, disease course, and more with myositis experts.

1:15 pm Nutrition – Interactive Cook Along (Download Menu)
Greg Minkovitz
2:45 pm Breakout Sessions

Women of Color and Myositis
Kaniah Gunter, Holly Jones, Cynthia Imana, Donna Barr and Elisa Glass 
A panel of African American women will discuss the unique ways their disease affects them, and the impact those who live with myositis can have serving on a Patient Advisory Council.

Hair and Skin Care – DM
Dr. Oluwakemi Onajin         
Those with DM not only experience itchy skin and muscle weakness, but also have challenges in finding beauty products, shampoos, and sunblock that does not further exacerbate their symptoms.  A big part of feeling good, is looking good.  DM can lead to hair loss as well as increased skin and sun sensitivity.  Learn from two expert dermatologists about products and strategies on how to address these hair and skin challenges. 

Remaining close to your partner
Dr. Lee Phillips, Ed.D, LCSW, CSAC, CST,CSCT      
This session will explore how those living with a chronic illness and their care partners cope with changing roles in their relationships, how to carve out time to tend to their partner’s emotional, social, and relationship-based needs, and how to be present for the other person. 

Workplace issues associated with living with rare autoimmune disease   
Karen Gross
People who have a disability face numerous challenges in the workplace. This session will discuss these challenges and your rights.

Diagnostic Armamentarium for Myositis
Dr. Marianne de Visser

This session will discuss classification of myositis. The usefulness of an EMG, a muscle biopsy and whether autoantibody assessment can replace a muscle biopsy.

4:15 pm Fireside Chats – Interactive support sessions
After a long day of learning and engaging with global experts on myositis, why not wind down for a small group Fireside Chat? The Fireside Chats provide another opportunity for care partners and myositis patients with the same diagnoses to reconvene and learn from one another. 

  • IBM (By last name)
  • PM/NM (By last name)
  • DM/ASs (By last name)
  • Care Partner

5:30 pm Second day concludes

Sunday, September 13, 2020

11:00 am Exhibit Hall Opens
11:30 am Breakout Sessions

COVID-19 and Immunosuppression 
Rohit Aggarwal, MD, MS
Those with immunosuppression are at increased risk for COVID-19. Learn about the latest research and guidance as someone living with a disease that causes immunosuppression.

Mindfulness and social isolation in advanced disease state 
Kim Beam, LCSW 
Mindfulness meditation is used to reduce stress, anxiety, depression, and even pain.  Join this experienced practitioner for a relaxing respite and learn the ways to incorporate more mindfulness meditation into your daily lives. 

Oxygen Therapy for those with lung disease (PM/DM)
Sonye Danoff, MD, PhD
Annlise Calypso-Benbow, NP  

Commonly prescribed for people with ILD, to reduce breathlessness and increase physical capacity.  This session will discuss oxygen therapy’s benefits.

PT/OT Practical Exercise
Erik Ensrud, MD    
Join this session to learn tips and tricks for continuing PT and OT exercise at home.  Tune-in and watch demonstrations on simple exercises to add into your everyday routine.

Medical Management for Advanced Myositis
Lora Clawson, MSN, CRNP

During this session you will learn about medical management in advanced stages of myositis and how your medical team can provide assistance. You will learn about management options for assisting dysphagia, ways that physical therapist can assist in recommending helpful durable medical equipment, ways that occupational therapist can assist with providing tools and tips to make everyday tasks more manageable, options available for nutrition assistance, as well as options for supportive care including assisted living to home health aides.

1:00 pm Breakout Sessions

HOW are PM and IBM different?  
Lisa Christopher-Stine, MD
Every year at the conference, some of those in PM sessions wonder if they might have been more accurately diagnosed with IBM.  A myositis expert helps you solve this mystery. 

Introduction to supportive tools and assistive devices
Tae Hwan Chung, MD 
Are you wondering what type of support or assistive tools are right for you?  Are you looking for more information how to find the right tools for assisting with balance, getting up from a seated position, safety when walking, safety in the bathroom?  Join this session to get tips on the best supportive tools to use.

Advanced care planning:  Home care support, medical directives, aging in place 
Martin M. Shenkman, CPA, MBA, PFS, AEP (distinguished), JD
During this session you will learn about what you need to know about what advance directives, powers of attorney and revocable trusts, you should     consider discussing with a lawyer as someone who is living with a chronic   condition.  You will learn how to plan for home care support or aging in place and what you need to discuss with your financial planner as you plan for a future living with chronic illness. Practical tips on making your finances safer and easier will be presented.

IVIG Treatments  
Jonathan Ogurchak, PharmD, CSP
Many myositis patients find that getting IVIg infusions at home or work can be convenient and comfortable. This session will discuss the ins and outs of IVIg therapy.

2:30 pm Home modification tour – Chris Dotur, TMA’s Board of Directors
3:45 pm Closing Session
4:00 pm Conference Concludes