Tentative Agenda

Thursday, September 5
10:00 am          Registration Opens
12:30 pm            Welcome and Conference Kickoff
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 an “Invisible Chronic Disease” – Mary Segal
4:15 pm            Breakout Sessions

  • Myositis 101 for IBM – Thomas Lloyd, MD
  • Myositis 101 for DM/PM/NM/ASyS – TBA
  • Classroom intro to aquatic therapy – Mickey Baron
  • Diagnosing myositis – Marianne DeVisser, MD
  • Exercise is medicine – Helene Alexanderson, MD and Tae Chung, MD
  • Learn how to craft your story – John Capecci

6:00 pm            Wine & Cheese Reception – Show Your Stripes – Adrain Walker, Piano Player
7:00 pm           Evening open discussion sessions

  • Open discussion IBM
  • Open discussion PM
  • Open discussion DM
  • Open discussion NM
  • 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 – TBA
  • Coping with steriods – Mazen Dimachkie, MD
  • Focus on amyopathic dermatomyositis – TBA
  • New research developments for IBM – Jens Schmidt, MD
  • Myositis 101 for IBM – Thomas Lloyd, MD
  • Exercise for all – Helene Alexanderson, MD

8:15 am             Breakfast
9:30 am             Morning Breakout Sessions (90- minute session)

  • Media communications training for advocacy – John Capecci
  • Focus on women only:  A safe space to share – Megan McGowan
  • Focus on men only:  A safe space to share – TBA
  • Focus on myositis 20-40 year olds – Katie Lamach
  • Focus on care partners only:  A safe space to share – TBA
  • Myositis doesn’t stop my life:  Unstoppable IBM patients – TBA
  • Adaptive living through technology – TBA
  • Aquatic exercise in the pool for those with DM/PM/NM – Mickey Baron

11:30 am          Mid-morning Breakout Sessions

  • Advocacy training – TBA
  • Fundraising training – TBA
  • Support Group leader training – TBA
  • Myositis patients as clinical trials participants – TBA
  • Nutrition for autoimmune diseases – Jacilyn Mikels
  • Make your life work for you:  Sharing your favorite strategies and devices – Megan McGowan
  • Caring for care partners – TBA
  • Aquatic exercise in the pool for those with IBM – Mickey Baron

12:45 pm         Lunch
2:30 pm           Afternoon Breakout Sessions

  • African American women tell their stories – TBA
  • When myositis makes it hard to swallow – Jessica Gregor
  • Specialty pharmacys and accessing medications – Tricha Shivas, Moderator
  • Gut microbiome and autoimmune disease – Jacilyn Mikels
  • Staying resilient as a care partner – Janet Edmunson
  • Pain management and quality of life – Yasser Salem
  • Navigating the health insurance maze – TBA
  • Aquatic exercise in the pool for all – Mickey Baron

4:00 pm           Late-afternoon Breakout Sessions

  • Focus on polymyositis – Wael Jarjour, MD
  • Coping with steroids – Mazen Dimachkie, MD
  • Exercise for those who already exercise – Helene Alexanderson, MD
  • Clinical features and progession of IBM – Namita Goyal, MD
  • Hand exercise for those with myositis – Malin Regardt, MD
  • Focus on women of color and myositis – Sonye Danoff, MD
  • Focus on dermatomyositis – Floranne Ernste, MD
  • Aquatic exercise in the pool for patients and care partners – Mickey Baron

5:15 pm           Feel Good Friday Night

  • Mindfulness meditation – LaDonna Johnson
  • Laughter yoga – TBA
  • Himalayan singing bowl therapist – TBA
  • Service animals – Kathleen Newbern, Canine Companions

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

  • Myositis and overlapping autoimmune diseases – Rossitza Chickova, MD
  • Nutrition for autoimmune diseases – Jacilyn Mikels
  • Accessing VA benefits for veterans – John McClun, Moderator
  • Blood flow-restricted exercise for IBM – Louise Pyndt Diederichsen, MD

8:00 am           Breakfast
9:00 am          Reports from TMA’s Medical Advisory Board
11:30 am        Mid-morning Breakout Sessions (Q&A)

  • Q & A antisynthetase syndrome – Sonye Danoff, MD
  • Q & A polymyositis – Floranne Ernste, MD
  • Q & A necrotizing myopathy – Marianne de Visser, MD
  • Q & A dermatomyositis – Ann Reed, MD and TBA
  • Q & A IBM – Thomas Lloyd, MD and Olivier Benveniste, MD
  • Practical guidance for care partners – Malin Regardt, MD and TBA
  • Q & A on exercise – Helene Alexanderson, MD and Tae Chung, MD

12:45 pm        Lunch
2:30 pm         Afternoon Breakout Sessions

  • New research developments for IBM – Jens Schmidt, MD
  • What rare disease patients need to know about clinical trials – Perry Shieh, MD
  • Myositis autoantibodies – Tahseen Mozaffar, MD
  • Exercise for DM/PM/NM new to exercise – Helene Alexanderson, MD
  • Focus on necrotizing myopathy – Andrew Mammen, MD
  • Minding your mental health – Tricha Shivas, Moderator
  • Blood flow-restricted exercise for IBM – Louise Pyndt Diederchsen, MD

3:45 pm         Late-afternoon Breakout Sessions

  • Exercise for IBM patients new to exercise – Tae Chung, MD
  • Myositis medications and treatments – Perry Shieh, MD
  • What causes IBM and therapies targeting these causes – Chris Weihl, MD
  • Focus on adults with juvenile myositis – Ann Reed, MD
  • Myositis and cancer – Andrew Mammen, MD
  • Myositis and lung diseases – Sonye Danoff, MD
  • Where we stand in the search for a cure – TBA

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

  • Getting started and sticking with an exercise plan – Helene Alexanderson, MD

8:15 am         Breakfast
9:15 am         Meet the Board of Directors
10:15 am       Closing Session
11:30 am       Conference Concludes