TMA provides a collection of informative webinars by myositis experts, covering topics related to the forms of myositis, treatments, complications, research, and more.
Participate in scheduled webinars, download resources and view recorded past webinars.
Join The Myositis Association on Wednesday January 27, 2021 at 6pm est. for a Virtual Meet & Greet with our brand new Executive Director, Chrissy M. Thornton!
While transition can be hard, Chrissy wants you to know how excited she is to work in partnership with the Myositis Community to realize our mission. Whether you are a member, care partner, donor, event participant, patient, healthcare professional, or friend; and whether you are currently active or haven’t been connected recently, it is her priority to hear your feedback and ideas.
During this webinar, you will learn a little more about Chrissy, her passion for empowering, supporting, and serving those living with chronic illness, TMA’s preliminary goals for 2021, and ways to become more involved with the organization! Please consider offering your TMA feedback and questions ahead of the webinar so that she can address them during the session.
COVID-19 Vaccination and Myositis
Tuesday, January 12th at 6:00pm EST
Join TMA as we host a Healthcare Professional panel discussion, featuring Dr. Rohit Aggarwal, Chair of TMA’s Medical Advisory Board, to provide additional information.
The Myositis Association has received many questions from the community about the Covid-19 vaccines and whether they are appropriate for people with myositis. The situation is complex (multiple vaccines, different timeline for approvals in different countries, availability issues) and is further compounded by each individual’s medical condition. TMA recommends that people with myositis make their own decision on whether to receive the vaccine in consultation with their physicians and the available data.
Feel Good Friday: Painting Class
Friday, July 10th at 3:00pm ET
Join TMA Member, Laura Deardoff for a painting lesson. This painting lesson is part of our Feel Good Friday events.
In preparation for this event, please purchase the following supplies
- 1 canvas – around 24 x 20 inches
- acrylic paint
- masking tape
- 1 inch flat brush
- size 8 round brush
- 2 disposable cups for water
- 2 paper plates
- paper towels
- paint clothes
Remember to put one coat of white paint on the canvas prior to the painting lesson.
Those of you who have attended TMA’s Annual Patient Conference are familiar with TMA’s Feel Good Friday Nights. During these challenging times, TMA has been offering fun Feel Good Programs to bring us together as a community. Past Feel Good Friday events have included Board Games, Musical Concerts, and inspirational lectures. If you have a talent you would like to share for a future feel good programs contact us at firstname.lastname@example.org
About The Speaker: Dr. Louise P. Diederichsen is associated professor and works at Copenhagen University Hospital in Denmark. Dr. Diederichsen is conducting research on how myositis impacts the heart and on physical training for patients with myositis.
About the Program: Myositis are systemic diseases which might affect other organs besides the muscles. Heart involvement has been reported in several studies and adds to the increased mortality in myositis. Both the vascular system and the heart itself can be affected by the myositis disease, which can lead to heart rhythm disorders and disturbed heart function. Early detection can prevent development of heart disease.
Description: Celebrate Smile Day with Laughter Yoga. Back by popular demand, TMA will host a second round of our laughter yoga with Lynn Lizarraga. To participate you do not need any equipment. Lynn does ask that you be willing to share your camera and unmute yourself to allow for us to hear each other laugh!
About the Presenter: Lynn Lizarraga is a retired teacher and certified Laughter Yoga leader. The concept of Laughter Yoga was developed in India in 1995 by a medical doctor who realized that, although the benefits of laughter are many, we don’t laugh long enough or often enough to achieve those benefits unless we laugh intentionally.
Feel Good Friday: BRAIN GYM, BALANCE & FALL PREVENTION
May 29, 2020 03:00 PM Eastern Time (US and Canada)
Description: Enhance mental alertness, body presence and stress reduction with PROVEN BRAIN GYM® ACTIVITIES. Working individually, with a partner, or in a group, you will participate in easy, fun movements that can be done seated or standing. These activities help you integrate the right and left side of your brain with your eyes, ears, arms, knees and legs bringing greater coordination and balance to your whole body. Join us for a fun and lively session as you GIVE YOUR MIND AND BODY A TUNE UP! Please bring water to class.
Laura Vandegrift is a licensed Brain Gym® Instructor/Consultant and a Certified Move With Balance® Instructor. She holds a B. S. in Organizational Behavior, has worked in the fields of Human Relations with the Dale Carnegie Institute, and Communication and Leadership in the Tourism Industry. She pursued Brain Gym® after her diagnosis of IBM in 2014. Brain Gym® helped her nervous system, stress. depression and the anxiety associated with this diagnosis. While Brain Gym® is for all ages, Laura works mainly with adults and seniors to help people maintain a better quality of life. The Move With Balance® program is based on Brain Gym® movements but specifically helps with fall prevention and balance. She teaches at a community college, senior centers, assisted living communities, and offers private sessions and classes online.
May 28 4:00pm Eastern Time (US and Canada)
Description: Join Dr. Namita Goyal, Associate Clinical Professor, Director Neuromuscular Medicine Fellowship Program, Department of Neurology, University of California Irvine, Dr. Tahseen Mozaffar, Dr. Tahseen Mozaffar, Professor of Neurology, Orthopedic Surgery and Pathology and Interim Chair of the Department of Neurology at University of California, and Dr. Lisa Christopher-Stine, Associate Professor of Medicine and Neurology and the Director of the Johns Hopkins Myositis Center for webinar on what has worked and what are the limitations of telemedicine.
May 26, 2020 05:00 PM Eastern Time (US and Canada)
This is open exclusively to myositis medical providers and researchers.
This month’s guest host is Dr. Prateek Gandiga. Dr. Gandiga is currently an Assistant Professor and clinical rheumatologist at Emory University in Atlanta, Georgia.
Attendees should come prepared to discuss the following articles:
Tofacitinib in Amyopathic Dermatomyositis-Associated Interstitial Lung Disease. Chen Z, Wang X, Ye S. N Engl J Med. 2019 Jul 18;381(3):291-293. doi: 10.1056/NEJMc1900045
Tofacitinib for refractory interstitial lung diseases in anti-melanoma differentiation-associated 5 gene antibody-positive dermatomyositis. Kazuhiro Kurasawa, Satoko Arai, Yumeko Namiki, Ayae Tanaka, Yuta Takamura, Takayoshi Owada, Masafumi Arima, Reika Maezawa. Rheumatology, Volume 57, Issue 12, December 2018, Pages 2114–2119, https://doi.org/10.1093/rheumatology/key188
Description: Join TMA for an afternoon of fun and games and gear up for a game of Scattegories. Scattegories is a fun and challenging word game. To play you will need a piece of paper, a pen, and your thinking caps. We look forward to seeing you then.
May 15, 2020 03:00 PM Eastern Time (US and Canada)
Lace up your Blue Suede Shoes and get ready to Rock n’ Roll. Elvis will be in the building for one afternoon only. So, Don’t be Cruel and join us for a Little Less Conversation and Little More Action and enjoy this fun Feel Good Friday Event!
May 14, 2020 03:00 PM Eastern Time (US and Canada)
Description: Please join Dr. Tom Lloyd, Associate Professor of Neurology and Neuroscience, Co-Director of the Johns Hopkins Myositis Center and Researcher Chair, of TMA’s Medical Advisory Board as he shares information on TMA’s Patient Symptom and Disease Management Tool called- “My Myositis Tracker.” This tool will empower you to track your symptoms and changes in your condition in between appointments in preparation for discussion with your doctor. This tool is meant to help empower patients increase opportunities for thoughtful and meaningful dialogue with their providers about symptoms, changes in condition, or other relevant changes. It is not meant to be used as a diagnostic tool.
May 1, 2020 03:00 PM ET
Description: Join TMA for an afternoon of fun and games and gear up for a game of trivia. We look forward to seeing you then.
TMA Leadership Interview and Programs Update
Apr 27, 2020 04:00 PM Eastern Time (US and Canada)
Join David Mochel, Vice Chair of TMA’s Governing Board and person living with Inclusion Body Myositis, for this unique patient to doctor interview with Dr. Rohit Aggarwal, Chair of TMA’s Medical Advisory Board. During this session, Dave will interview Dr. Aggarwal using questions provided by you, TMA members. During this webinar, TMA Executive Director, Mary McGowan, will also provide a brief update on upcoming educational support programs like the Virtual Myositis Summit, Myositis Awareness Month, The Giving Challenge, and The Annual Patient Conference.
David Mochel, MD, FACS 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.
Rohit Aggarwal, MD, MS
Associate Professor of Medicine, Medical Director, Arthritis and Autoimmunity Center, University of Pittsburgh
Dr. Aggarwal is an associate professor of medicine at University of Pittsburgh, Rheumatology division. He is also medical director of arthritis and autoimmunity center as well as co-director of myositis center at University of Pittsburgh. Dr. Aggarwal is the Chair of the Myositis Association’s Medical Advisory Board and a recent recipient of one of The Myositis Association’s Innovative Research Grants His research interest includes clinical and translational research in myositis, anti-synthetase syndrome and association interstitial lung disease.
Feel Good Friday – Sing-A-Long
Join us on Friday, April 24 at 3:00pm for Feel Good Friday Sing-A-Long. No singing talent required! Dr Larry Culliford, a consultant psychiatrist in Brighton, England says “’There are hidden reserves of strength and hope, and indeed happiness, that singing somehow spontaneously helps people to find. It may be this is one of the ways in which mind and body are interrelated. One cannot overestimate the value of using your voice in a regular way,” he adds. “I think it is just a naturally exuberant thing for humans to do.” Join us Friday afternoon as we bring hope and joy to these challenging times.
TMA’s International Myositis Journal Club
April 22 4:00pm ET
Join TMA for the inaugural meeting of The Myositis Association’s International Myositis Journal Club.
This is open exclusively to myositis medical providers and researchers.
Join this month’s Guest Host of TMA’s International Myositis Journal Club, Dr. Mahroo Tajalli, Clinical Research Fellow, Department of Dermatology Warren Alpert Medical School of Brown University.
Attendees should come prepared to discuss the following article: “The systemic management of cutaneous dermatomyositis: Results of a stepwise strategy” Int J Womens Dermatol. 2017 Dec; 3(4): 189–194. Published online 2017 Jun 13. doi: 10.1016/j.ijwd.2017.05.001
Isolation Protocols, Environmental Challenges and Autoimmune Diseases
Apr 21, 2020 04:00 PM ET
As some individuals follow the stay at home and cleaning protocols during this pandemic, they find themselves increasingly exposed to elements and chemicals that pose increased challenges for their autoimmune disease. The Myositis Association is joining together with AARDA for a discussion with on how social isolation and cleaning protocols can pose increased challenges for those living with autoimmune disease, especially those in underserved populations, and tips for what people can do try to reduce exposure and risk.
Dr. Aggarwal is an associate professor of medicine at University of Pittsburgh, Rheumatology division. Dr. Aggarwal is also medical director of arthritis and autoimmunity center as well as co-director of myositis center at University of Pittsburgh. Dr. Aggarwal is the Chair of the Myositis Association’s Medical Advisory Board. His research interest includes clinical and translational research in myositis, anti-synthetase syndrome and association interstitial lung disease.
Dr. Iazsmin Ventura, MD Assistant Professor, University of Chicago. Dr. Iazsmin Bauer Ventura is a rheumatologist with main interest in inflammatory myopathies. She also provides expert care in inflammatory myopathies, in particular dermatomyositis, anti-synthetase syndrome, and polymyositis hopes to contribute to this field by providing more information on how these diseases present differently in the African-American population.
E. Felicia Brannon has been living with Dermatomyositis, Interstitial Lung Disease, and Pulmonary Arterial Hypertension since 2013. As the former Executive Director of Community and Local Government Relations for UCLA, she is a tireless advocate for those who have environmental exposures issues, like secondhand smoke in multiunit housing, as part of their Myositis journey.
Virginia Ladd is the former President and Executive Director of the American Autoimmune Related Diseases Association, Inc. (AARDA), an organization that she founded to bring a national focus to autoimmunity and increase collaboration in autoimmune research, education, awareness, and advocacy. Virginia is also an active member of the Friends of NIEHS a broad coalition of organizations, representing public and environmental health, environment, children’s, women’s and medical communities, support, follow and call attention to the vital work being done by the National Institute of Environmental Health Sciences (NIEHS).
An afternoon of Inspiration!
Friday, April 17 at 3:00pm
About our Presenter: Kaniah Gunter has been living with dermatomyositis since 2017. Kaniah is a Support Group Leader and Member of TMA’s Women of Color Patient Advisory Council. Since her diagnosis, Kaniah has worked to take charge of her health and is now studying to be an integrated nutritional health coach. Kaniah is the mother of two beautiful children and lives in Norfolk, VA.
About this program: Time to spread “LIGHT” to every negative thought, difficult situation, or road we are traveling, especially during these trying times. It is time for infusing INSPIRATION,POSITIVITY into our life by sharing an inspirational poem that will help guide us to live in the present MOMENT(breathing, laughing, and smiling). Kaniah will also and share powerful tools that will help us take charge of our health with healthy tips. SEE YOU FRIDAY!
Feel Good Friday – What the world needs is music and love
April 10, 2020, 5:00pm ET
Presenters: Edward Oakley & Donna Barr-Oakley
Edward and Donna exude love in their relationship and the music they share. What the world needs now is love, as we quarantine. Edward is a native son of Jamaica with a velvet smooth voice. His wife Donna compliments him well with her soulful voice.
Event: Join us for a 25-30 minutes concert of Reggae, soul, music and love!
National Briefing: CDC on COVID-19 & Autoimmune Disease
Apr 3, 2020 02:00 PM ET
TMA, as member of the National Coalition of Autoimmune Disease Patient Groups, is proud to partner with AARDA on this one-hour webinar featuring panelists with a profound understanding of COVID-19 and its effects on the autoimmune community. Upon registration, participants will be invited to submit questions for our panelists. We will do our best to field as many questions as possible during and after the webinar.
Nancy Carteron, MD, FACR
Aline Charabaty, MD, AGAF
Clinical Director of the GI Division and Director of the IBD Center @Johns Hopkins-Sibley Memorial Hospital
Georgina Peacock, MD, MPH, FAAP
Division Director for the Division of Human Development and Disability @National Center on Birth Defects and Developmental Disabilities
How to stay positive as a myositis warrior during times of crisis
April 3, 2020 3:00pm ET
About our Presenter: Elisa Glass has been living with dermatomyositis since 2016. Prior to her diagnosis, Elisa was a professor, specializing in the field of Drug and Alcohol abuse. Elisa owned and operated MYTHS, LLC which focused on helping members in need, especially homeless veterans.
About this session: Elisa is a favorite presenter at our Feel Good Friday night sessions at the Annual Patient Conference. During this session, she will present some mindful ways to bring positivity into tough times.
Feel Good Fridays- Laughter Yoga
March 27, 3:00pm ET
About our Presenter: Lynn Lizarraga is a retired teacher and certified Laughter Yoga leader. Lynn retired from teaching a few years after being diagnosed in 2003 with IBM. She spends her time living with her husband, John, in Yuma, AZ as a music leader in her church, leading Laughter Yoga sessions, and developing presentations to share how sound instruments can help with healing. The concept of Laughter Yoga was developed in India in 1995 by a medical doctor who realized that, although the benefits of laughter are many, we don’t laugh long enough or often enough to achieve those benefits unless we laugh intentionally.
About Laughter Yoga: No special equipment is required to participate in Laughter Yoga. You may wear regular clothing and remain sitting comfortably during the session. The laughter exercises are designed to give you a great internal massage and lift your diaphragm to help you breathe more easily. Feel free to participate as much or as little as you are able.
20-minute mindfulness meditation program
March 20, 2020 at 2pm ET
Presenter: Kim Beam Is a Licensed Clinical Social Worker practicing in Pennsylvania. She is also a qualified mindfulness instructor through UMass Medical School. Kim is a cancer survivor and the author of What Doctors Don’t Tell You: One Woman’s Journey Through Hodgkin’s Lymphoma
Myositis and Mobility Equipment
March 13, 2020 1:00-2:00pm ET
Join TMA and Ginger Walls, PT, MS, NCS, ATP/SMS, Regional Clinical Education Manager from Permobil for this informative webinar to learn about mobility equipment available to support those living with myositis.
Ginger Walls has 30 years of experience as a physical therapist in the area of neuro rehab and wheelchair seating/mobility. She directed the Outpatient therapy clinics and the Seating/Mobility Program at Medstar National Rehabilitation Hospital in Washington, D.C. Additionally, Ginger has provided a variety of continuing education courses and lectures in the area of seating/mobility for many years. She has presented at major industry conferences including ISS, RESNA, and the PVA Summit. Ginger took on the role of Clinical Education Specialist for Permobil in 2015.
Autoimmune Diseases and Nutrition
Wednesday, January 29, 2020 at 3pm ET
Join Renee Lantner, dermatomyositis patient and former TMA Board member, and Susan Whitacre, MS, RD, LD, Dept of Neurology, University of Kansas Medical Center for a lively discussion on autoimmune disease and nutrition
Renee Lantner is a patient with dermatomyositis, a physician and former TMA board member. She became very interested in nutrition as a means to help in her journey with her disease. Susan has been the dietitian for the MDA clinic at the University of Kansas Medical Center for 18 years. She also has worked for the ALS clinic at KU for the last 12 years.
Caring for Caregivers: A webinar from The Myositis Association and Myositis Support and Understanding
In celebration of National Caregivers Month, TMA and MSU invite you to join us for a conversation about the challenges of caring for someone with myositis and resources available to help. Featured speakers include:
- Jill Kagan from ARCH National Respite Network and Resource Center
- Jenny West from FamilyMeans, a Minnesota-based caregiver support agency
- Anne Stewart from Well Spouse Association and wife of an IBM patient
TMA is hosted a webinar on October 29th at 1:00pm EST with guest speaker, Carla Dellaporta from NeedyMeds. NeedyMeds is a national nonprofit that connects people to programs that will help them afford their healthcare expenses. Carla is the Director of Education & Partnerships at NeedyMeds. Her professional background has been dedicated to non-profit organizations. In her role at NeedyMeds she focuses on educating people about NeedyMeds and the healthcare cost savings resources offered and expanding partnership efforts. TMA is working with NeedyMeds to offer members of The Myositis Association discounted drugs and durable medical equipment.
Click here to download the drug discount
Reproductive Health in Myositis and other Autoimmune Diseases a TMA educational webinar
Monday, August 5, 2019 at 1pm ET
Join Dr. Lisa Sammaritano for a lively discussion about how inflammatory diseases like myositis affect reproductive issues such as birth control, pregnancy, breast feeding, and menopause.
Dr. Sammaritano is a rheumatologist at Hospital for Special Surgery in New York City. She maintains a busy clinical practice and participates in clinical research geared towards patients with rheumatologic conditions. She has a particular interest and expertise in reproductive issues in rheumatic disease patients, including contraception and pregnancy, and has presented on this topic to the TMA Support Group at Hospital for Special Surgery.
Please join on July 30 11 am – 12 noon EST for a very special webinar with FDA.
Topic: What is the FDA? What is the FDA’s role in research, drug development, and drug approval? How does the FDA work with the Rare Disease Community? What feedback is the FDA interested in getting from the patient community (especially the rare disease patient community)? Are there challenges/barriers that the FDA foresees to drug development now or in the future? What gives the FDA hope about treatments and cures?
Dr. Sonye Danoff and Dr. Cheilonda Johnson
Women of Color and Myositis
A Myositis Awareness Month webinar
Wednesday, May 8 at 12noon ET
Women of color are disproportionately affected by myositis diseases. During Myositis Awareness Month, The Myositis Association is reaching out to this community to raise awareness about myositis diseases and the importance of seeking medical attention when individuals experience symptoms.
Drs. Danoff and Johnson will offer a brief presentation about the unique challenges that affect women of color. A generous amount of time will be available for questions from the audience.
Pulmonologist Sonye Danoff, MD, PhD is Co-Director of the Interstitial Lung Disease Clinic at Johns Hopkins University Medical Center and Associate Director of the Johns Hopkins Myositis Center. She is one of the leading physician scientists dedicated to understanding and treating interstitial lung disease (ILD). Dr. Danoff is a member of TMA’s Medical Advisory Board.
Cheilonda Johnson, MD, MHS is Assistant Professor of Medicine at the Hospital of the University of Pennsylvania. She specializes in pulmonary medicine with a focus on interstitial lung disease (ILD) and sarcoidosis.
Presented by TMA staff
Annual Patient Conference Webinar
April 30 at 2pm ET
TMA’s Annual Patient Conference takes place in Minneapolis on September 5-8. We are so eager to share our enthusiasm about this year’s Conference that we’re hosting a webinar to let you know some of what’s new and exciting in this year’s presentations and activities. Lots of time will be allotted for you to ask questions about your areas of interest. Join us!
Dr. Conrad “Chris” Weihl
Position Your Myositis Grants For Success
April 9, 2019 @ 12 noon ET
In this webinar, TMA medical advisor and research committee chair Dr. Conrad “Chris” Weihl speaks to investigators who hope to submit a research grant application as well as institutional leaders who advise trainees and early career faculty.
Christina Charles-Schoeman, MD, MS
American Heart Month
February 21, 2019
Dr. Charles-Schoeman is a rheumatologist and associate professor of medicine at Ronald Reagan UCLA Medical Center in Los Angeles. She is an active investigator in multiple clinical trials involving novel therapies for myositis, and her research in this area includes the study of cardiovascular disease in myositis, including the use of cholesterol-lowering statin drugs and their association with myopathy.