A Conversation with TMA’s Executive Director

Today, we have a conversation with TMA’s Executive Director Bob Goldberg. As we near the end of 2015, Bob answers your questions about the organization’s programs and services, and efforts to provide support and information to patients as TMA continues to fund research in pursuit of better treatments and a cure. Bob will answer questions that are of interest to the greatest number of members. Questions should focus on how TMA serves its members.

TMA’s Greatest Need for the year ahead is to continue to hear from its members about what we can do better or are not doing for you currently. Although we have a small staff of 4 full-time employees, we try to do as much as possible to be directly responsive to what our members need. The Member Survey we conducted last year was to learn what those needs are, and I think we have made progress toward addressing many of them. The results of the survey can be founded at http://www.myositis.org/about-tma/2014-member-survey . However, there is always more that can be done and we need to be selective. We want to do what will benefit the most members, or address an urgent, critical need for a smaller subset. We need to hear from you and receive your feedback so that we can continue to improve. We are all in this fight together and need to “have each other’s back.”

Finding doctors who are aware of and knowledgeable about myositis can be challenging. We suggest TMA members speak to others in their support group to learn of whom locally might be a good physician for you. Some support groups maintain lists of physicians who are used by local support group members. You can also post to TMA’s online bulletin boards (Community Forum) to ask if anyone has a recommendation in your area. If your doc wants to learn more or consult with someone knowledgeable, they can find TMA’s Medical Advisory Board listed on our website along with their contact information. Lastly, you can always contact TMA and we will be glad to help.

Because myositis is such a rare disease, it is quite likely that many physicians will never encounter a myositis patient in their lifetime. To at least introduce the topic, TMA initiated a Visiting Professors program this past year where members of TMA’s Medical Advisory Board present lectures at medical schools about myositis. This program has been enormously successful. 35 medical schools have asked for lecture and 20 have been completed so far. The others will likely have lectures in 2016. TMA is also trying to create greater public awareness of the disease through events such as Myositis Awareness Day, the event we held with the San Francisco Giants at their baseball stadium this year, etc. TMA also published this past year the Physicians Guide to Myositis to educate physicians about the disease. It was mailed to 2,000 physicians and if anyone would like one to share with their doctor, emailtma@myositis.org to receive it. There is no cost to you or the physicians wanting it.

The SSA/Ro antibody is a myositis associated autoantibody – which means that it can be found in patients with myositis but also in other autoimmune connective tissue diseases – such as SLE and Sjogren’s syndrome. Also this autoantibody can be found alone or together with other autoantibodies – including anti-Jo1. Anti-Jo-1 is a more specific autoantibody for myositis and patients with myositis accompanied by interstitial lung disease (or the anti-synthetase syndrome). The study of myositis specific antibodies offers a lot of promise and is currently being pursued.

I wish TMA could afford to help but there are so many patients facing the same problem as you that it would not be possible for TMA to offer financial aid for van conversions. There were a few companies at TMA’s Annual Conference this year who were exhibitors and offered conversion vans and were available to consult. TMA will soon be listing on its website the names and contact information for the exhibitors from this year’s Conference. You might want to check there toward the end of the year. Mobility Freedom is one of the companies you might want to try speaking to.

At this point a biopsy is still recommended. There is still a lot not fully known about the role of the antibodies and its specificity. For instance, the antibodies are seen in other diseases like Sjogren’s and lupus. So at this point, the biopsy remains the standard of care. At some point in the future the blood test may make a muscle biopsy unnecessary, but not just yet.

Yes, we funded more research in a single year in 2015 than ever before. We would like to continue to fund research close to that figure ($747,000). However that will be difficult to sustain without bequests or other large gifts that we are dependent upon to fund our research program. TMA’s Board of Directors will decide in January, 2016 how much to make available that year.

TMA has focused more attention on alternative medicine and holistic approaches. Some of these have been discussed at the TMA Annual Patient Conference and our online bulletin boards are a wonderful forum for patients to share information as they wish. TMA is currently funding a major research project at the National Institutes of Environmental Health Sciences to study potential environmental triggers of myositis. It compares military personnel who developed myositis with other military personnel who had similar exposures but did not develop myositis. Results from this 4-year study will not be known before 2018.

There are more clinical trials than ever being conducted to find therapies that can slow the progression of IBM and restore muscle and strength. The follistatin gene therapy trial offers promise as does Novartis’s trial of BYM338. Results from both of these trials should be known in 2016. Stem cells are still not considered to be effective for myositis although some patients who have been treated feel like they have experienced some improvement. There are other trials being considered for IBM and there are several trials underway for DM and PM such as Novartis’ BAF312 trial and Idera’s IMO-8400 trial. There is not enough information available about the Regeneron trial to judge its prospects.