The Myositis Association announces the appointment of three new myositis experts to its Medical Advisory Board. TMA’s MAB is now made up of 23 of the world’s most respected myositis researchers, scientists, and clinicians. These medical professionals are nominated and elected to serve on this distinguished board by their medical colleagues, because they are committed to making life better for those who live with myositis diseases.

Members of the MAB donate their time to TMA and serve by, for example, reviewing research funding proposals and drafts of the newly revised Myositis 101: Your Guide to Understanding Myositis. MAB members agree to consult with a patient’s local physician when they need advice on how to treat myositis. They also help raise awareness of this rare disease among their medical colleagues by presenting lectures to medical students and grand rounds talks with medical trainees such as residents and research fellows.

These committed professionals also serve as the foundation of TMA’s Annual Patient Conference, offering a wide variety of informative talks and answering countless questions from attendees about myositis diseases.

This year, TMA sought to broaden the diversity of specialties represented on the MAB. In addition to specialists in neurology, rheumatology, dermatology, and physical therapy, TMA’s MAB now includes a physiatrist, an occupational therapist, and a pulmonologist.

Tae Hwan Chung, MD is a physiatrist, rehabilitation specialist, and an assistant professor of medicine at the Johns Hopkins University. He runs a multidisciplinary rehabilitation clinic associated with the Myositis Center that includes physical, occupational, and speech therapists. In addition to his clinical work with patients, Dr. Chung works collaboratively with colleagues at the Myositis Center, conducting both basic and clinical research on all forms of myositis. Dr. Chung’s addition to TMA’s MAB recognizes the growing awareness of the importance of physical therapy and exercise as a treatment for myositis.

Malin Regardt, PhD, OT is an occupational therapist and head of research and development for occupational and physical therapy at Karolinska University Hospital in Stockholm, Sweden. In 2015, Dr. Regardt received a TMA research fellowship grant to complete an investigation on hand function, activities of daily living, and quality of life in patients with sIBM. She continues her clinical research on all forms of myositis. Dr. Regardt brings additional rehabilitation support to TMA’s MAB.

Sonye Danoff, MD, PhD is a pulmonologist, specialist in pulmonary and critical care, and an associate professor of medicine at the Johns Hopkins University. Dr. Danoff is the world’s leading expert on lung disease associated with myositis. She leads both basic and clinical research that has been fundamental to the understanding interstitial lung disease and other pulmonary complications of myositis. Dr. Danoff’s addition to TMA’s MAB supports the recognition of ILD as one of the most serious life-altering complications of myositis.

 

 

7 comments on “TMA expands Medical Advisory Board”

  1. 1
    Moonyean Smarzinski on October 5, 2018

    Message for Dr. Regardt: welcome to the TMA Advisory Board. I noted that your focus has been on IBM. I was diagnosed with IBM at Mayo, Rochester in 2017 after a five year search and meeting with fourteen doctors. As a business professional I am committed to researching my new disorder looking for all alternatives that may help my journey. I was thrilled to learn that a research company in Seattle has launched research using IBM as their disease patients to use on the trial (Phase2)using dalazatide treatment
    www kv13therapeutics.com – Craig Philips, CEO.
    Hopefully there will be a major breakthrough for IBM and all autoimmune diseases. My exercise includes using the Alter G anti-gravity treadmill http://www.alterg.com I am working with PT and OT therapists , but we are searching for additional treatment that may slow the progression of IBM. I would welcome your comments and any questions you may have regarding the connections I have made. Regards, Moonyean Smarzinski

    1. 2
      Linda Kobert on October 10, 2018

      Hello Moonyean. Thank you for sharing these connections you’ve made. At this point, exercise and physical therapy are the best choice for slowing the progression of IBM. Another medical advisor, Dr. Tahseen Mozaffar, is involved in researching the possibilities of dalazatide in IBM. Another medication, arimoclomol, is also currently recruiting patients to test the safety and effectiveness in IBM. And another clinical trial may soon begin for another medication, rapamycin.

  2. 3
    Nancy Singer on October 12, 2018

    Message for Dr Tae Hwan Chung,
    I was diagnosed with polymyositis and MCTD in 2003. PT and exercise has always been a part of my treatment plan and I am currently working with a great hands on physical therapist. However, I have not met any physical therapists familiar with my condition. I also have ILD and an oxygen requirement with activity now which has led my to stop practicing pediatrics.
    I am wondering if there were any specific PT or exercise therapies you find most beneficial for patients with polymyositis.
    Over the years I have become more weak, fatigued and in pain despite my PMS being stable for a few years now.
    Thank you , Nancy Singer

    1. 4
      Linda Kobert on October 14, 2018

      Nancy, if you’d like to contact a member of TMA’s Medical Advisory Board, you can find their info here: https://www.myositis.org/about-tma/medical-advisory-board/

  3. 5
    Nancy Singer on October 14, 2018

    Thank you
    Nancy

  4. 6
    Linda Kobert on October 17, 2018

    We have received several comments here from folks who want to communicate with one or more of TMA’s medical advisors. We do not want to share the personal information of these individuals in this public forum. If you have a question about your specific symptoms or treatment, please have your physician reach out to one of our medical advisors for consultation and advice. Contact information can be found here: https://www.myositis.org/about-tma/medical-advisory-board/

  5. 7
    Robert A Shepherd on October 21, 2018

    Was just diagnosed IBM the whole family has been looking for any kind of clinical trials going on that I could be apart of. We were told that Ohio State was doing a study and when we checked with them they said that had all the patient needed but may be doing another in the spring. We put my name in and hopping to get into that one, which would for me as I’m having shoulder surgery this month as a result of one of the falls I’ve had dealing with this.

    Thank You
    Robert A Shepherd

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