At the recent annual meeting of the International Myositis Assessment and Clinical Studies Group (IMACS) in Chicago, more than 130 international myositis experts joined in recognizing TMA’s retiring Executive Director Bob Goldberg.

The meeting’s participants reflected on Bob’s leadership and commitment to the myositis patient and research community over the last 16 years, which have transformed the landscape of this rare disease, creating greater awareness, enhanced patient support services, increased patient participation in research studies, and an improved research environment through the growth in financial support for research and multidisciplinary collaborations. TMA board members, TMA-funded researchers, and IMACS Members from around the world spoke of Bob’s dedication and the significance of his contributions.

Bob has spent his career in health services management, coming to TMA from his position as Vice-president of Operations and Membership at the National Health Council. During his tenure at TMA, his compassion for those who struggle daily with the challenges of living with these often-debilitating diseases led his efforts to develop TMA into the leading myositis patient advocacy and support organization in the world.

Bob spearheaded many logistical changes that moved the organization forward into the 21st century. He streamlined operations, improved electronic membership and information-sharing procedures, and recognized the potential and international power of the internet. In his early days, with the guidance of an expanded Board of Directors, he changed the name from the Myositis Association of America to The Myositis Association and later removed the membership fee to make TMA’s services available to all. TMA’s move to Alexandria, VA, just minutes from Capitol Hill positioned the organization as a more effective advocate for people with myositis.

Early on, Bob recognized the value of TMA’s Annual Patient Conference to support and encourage patients, as well to share information and build trust. In order to make these support and educational opportunities more accessible to a greater number of people, conference locations began to rotate to different areas of the country and included many more world-class speakers. Under his leadership, TMA expanded its support group network to include 40 Keep in Touch (KIT) support groups across the US, as well as championed new patient support groups internationally. Bob also initiated the establishment of Myositis Awareness Day and later expanded that to designate May as Myositis Awareness Month.

Recognizing that the patient’s best hope for a cure lies in research, Bob focused strongly on developing relationships with the scientists and clinicians who work to understand and treat the myositis diseases. TMA is now supported by a Medical Advisory Board of 23 of the world’s leading myositis experts with a variety of subspecialty and research expertise.

TMA reaches out to raise awareness among health care professionals and medical trainees, to bring recognition to the symptoms and treatment of myositis diseases through such initiatives as the Visiting Professor program with US medical schools and publications for health professionals such as The Physician’s Guide to Myositis. Through these and other efforts, TMA hopes to inspire young physicians and scientists to a career devoted to helping myositis patients.

Under Bob’s leadership, TMA also created and developed a research funding program, providing fellowship support for post-doctoral trainees and seed money to develop innovative pilot projects that will support larger funding opportunities. Many of the researchers currently working to unravel the mysteries of myositis diseases have been beneficiaries of TMA’s research funding program, which has awarded 37 grants and 19 research fellowships, totaling nearly seven million dollars since 2002.

To further support innovation among the myositis research community, Bob created opportunities for specialists in the various disciplines that care for myositis patients to come together and exchange ideas. TMA has sponsored an annual Myositis Symposium, created face-to-face Medical Advisory Board and Research Committee meetings, and supported multidisciplinary meetings and organizations such as the biannual Global Conference on Myositis, the International Myositis Assessment and Clinical Studies Group (IMACS), the Rheumatology-Dermatology Society, and international consensus groups on research topics such as the development of new myositis classification and response criteria. Through these conferences and meetings, the world’s leading myositis experts have developed more frequent scientific interactions and collegial relationships, which are daily moving the needle toward greater understanding of myositis diseases and better treatment options for more patients.

Bob’s accomplishments during his tenure at TMA have been enormous in terms of patient support, myositis research, and advocacy. He will be remembered as a humble leader whose quiet efforts led to major successes, while he remained behind the scenes taking little credit. His sincere efforts to improve the lives of individuals who live with myositis have been greatly appreciated and the myositis community thanks him for his extraordinary efforts.

 

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