Something to think about when you’re out shopping this holiday season.
Below is information TMA sent out for upcoming live discussions. We will be sending out reminders of these live discussions as they get nearer – but mark your calendars now!
Note: TMA shares information via email blasts, and while we try to repost these for the group we don’t want to be too repetitive for members who already subscribe to TMA. If you want to be kept fully informed of what is happening with TMA we suggest you follow them on Facebook, click here, or signup as a TMA member (membership is free!), click here.
TMA schedules winter online discussions with medical experts.
There will be several online question and answer sessions with members of TMA’s Medical Advisory Board during the next few months. Listed below are the topics, MAB member answering questions, date and time for these online discussions.
For those of you unfamiliar with the discussions, here’s how they work:
A week or so beforehand you can submit your questions in advance. The MAB member will choose the questions to answer — usually those of most general interest — and you’ll see both the question and answer posted during the live discussion. You can also ask questions online after the discussion begins. We ask people who are participating in the live discussion to try avoiding asking questions that have already been answered so that we can answer as many unique questions as possible during the hour-long discussion.
Dr. Steven Greenberg: BYM338 – Novartis Breakthrough Therapy for IBM
Monday, December 16, 12 noon ET
Dr. Greenberg is a neurologist and director of the inclusion-body myositis lab participating in research at Harvard University Medical School, Brigham and Women’s Hospital, and Children’s Hospital in Boston. He conducted a small pilot study of the Novartis drug BYM338.
Dr. Tahseen Mozaffar: Understanding autoimmunity
Thursday, January 16, 2:00 pm ET
Dr. Mozaffar is director of the Neuromuscular Center at UC Irvine Medical Center in California and is a nationally recognized expert in his field. He serves as a principal investigator and co-investigator in clinical trials of drugs for neuromuscular conditions, and is the author of many professional journal articles.
Dr. Mark Gourley: Autoantibodies
Tuesday, February 11, 2:00 pm ET
Dr. Gourley is a rheumatologist in Washington, DC, with a long-time connection with the myositis studies at the National Institutes of Health. He has co-authored many studies on the inflammatory myopathies
So we received the following email from one of our group members who has IBM and was interested in the upcoming BYM338 trial. Here’s what he had to say about his experience -
I called Dr. Sivakumar’s office in Phoenix as soon as I read the information regarding the trial and locations. I was told to get the doctor who has been seeing me for my IBM for the last twelve years to submit my diagnosis and treatment history to them. I was also asked to fax them my personal history as well as any medications and supplements I was taking. After a few days I called them back to make sure they had received all of the requested information. They said they had and would get back to me within a week. After a week I called them back …. many, many times and left messages each time. After three weeks of calling I finally reached Mr. Willner who is assisting Dr. Sivakumar. I was told that I was fourteenth on the list and they would eventually go forward with nine or ten for the trial. I asked him many questions and here is a little of what I found out.
1. This will be a double blind trial which means you may be getting a placebo and not BYM338.
2. Initially, you will have to be in Phoenix for five weeks as they begin the infusions.
3. You will then have to come back to Phoenix once a month for the next two years for the infusions.
4. At the end of two years all of the patient information and findings will be submitted to the FDA for
consideration and evaluation.
5. It could be possibly another two years before the FDA approves BYM338 for approval and
6. Here’s the best for last. After the two years of being on the drug there is no guarantee that the FDA
will allow patients in the trial to continue to get the infusions while they are analyzing the results. So,
even if the drug is doing what everyone hopes it will you may or may not be able to continue to take it
until the FDA gives their approval.
Basically, I wasn’t very pleased with the way they handled their communication with me. I was told they would call me back and that just never happened. For myself I am not interested in participating in a trial where there would be a chance that I would be getting the placebo … and I do understand why they do it that way. Additionally, I would not be able to handle the expense of going to Phoenix once a month for the infusions. I am hoping that, possibly, in the near future there might be a trial available at Anchutz or somewhere closer to the Denver area.
Just thought I’d let you know of my experience.
We know that getting into clinical trials is difficult and a pretty expensive proposition for most. We’d love to hear anyone else’s experiences with getting into a trial – good, bad, or ugly. Let us know!
Thinking about doing some hydrotherapy next year? Here is a list of the Denver area pools and their temperatures.
Be sure to call for programs available, this list was created last year. Thanks, Mark Manago!
And here’s another pool that our TMA member John Mozer emailed us about:
Just came across this art installation – I think it is sublime.
Whatever gets you through the night…