MAD About MS: Robert McBurney
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Note: This is part of an ongoing series of articles highlighting people who are Making A Difference (MAD) for MS.

Robert McBurney, Ph.D., is the Chief Executive Officer of the Accelerated Cure Project and my co-principal investigator for iConquerMS™. I have also come to know him as a personal friend as well as a friend to the MS Community.  He has an insatiable desire to learn more about MS and other disorders of the central nervous system, and has traveled almost around the world in his search for answers to find a cure.  Originally from Australia, Dr. McBurney was on the faculty of University of Newcastle upon Tyne, United Kingdom, and the Medical School of University of New South Wales, Australia. He left academia to work in the biotech industry in the greater Boston area, including Cambridge Neuroscience, and was a cofounder of Optimal Medicine Ltd.

I talked with Robert recently about his work with MS and what motivates him now to work for a non-profit organization after his other successes.

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Studying MS is a Challenge & Rewarding

Laura: What got you interested in multiple sclerosis research?

Robert: The were two things. First was our company (Cambridge NeuroScience) in a very organized fashion had a major discover of a molecule that turned out to have potential for treating MS. Someone took that molecule and tried it in an animal model for MS and it had remarkable effects. It stems from a fundamental interest in nervous system disease.

Secondly, unlike Parkinson’s which affected my father, or a stroke like my mother had, there is a wide breadth of population affected by MS, and still despite the success of the drug industry we still don’t know what causes MS and we don’t have a true curative approach. MS affects a wide range of people – on one hand we have the typical multiple sclerosis and then we have people like you who were diagnosed much later in advanced years.

Working in a non-profit organization

Laura: But the work you do at ACP is so different than what you did previously in the biotech industry and in teaching. How do you change your focus from a  for-profit company to a non-profit organization?

Robert: What I used to say to the team at Cambridge was what we are trying to do here is really, really hard and let’s try to make an impact on the disease and the commercial aspects will follow. With ACP it’s just a different approach to the same problem – let’s work really really hard and let’s try to make an impact. The thing that is very exciting about iConquerMS is we bring people with MS completely into the picture and the process that can impact their health.

Robert: I often wonder how could we have done research in a company without bringing in the people affected as part of the process?  Companies do that all the time. We ran a lot of clinical trials jointly with pharma companies and did we ever have a person with a particular disease actually involved? By and large our clinical studies were driven by physicians. The success of treatments were assessed using regulatory outcomes measures but these were standardized scales. Who knows who developed them and I never bothered to find out the genesis of these outcome measures. More importantly, we never had a community panel to evaluate the measures and be sure we were studying something important to them – as I look back I can see that was pretty pathetic…

Engagement Challenges

Laura: Now that you are working with people with multiple sclerosis closely in iConquerMS have you discovered any tough challenges?

Robert: #1 – people are individuals and everyone is a little bit different, particularly when it comes to brain diseases which can affect any part of the brain. You have a wide range of outcome measures and it is hard to know exactly how to incorporate the information from people with MS because this is not a one size fits all disease.

The other challenge is it’s very easy to put together a focus group or something like that and pay people for a day of their time, but I don’t think that is getting the information that one not be getting a truly informed input because it’s not really engaging people. That is the real challenge – I think engagement requires that you give something back and that is the hardest piece. We need to focus on how we give back to people even if just in modest ways.

Laura: What do you hope we get out of iConquerMS?

Robert: What I know from my own recent personal bouts with the medical system,  I got a lot out of my treatment because I am a particular type of person who asks questions and builds relationships with the doctors and I was really involved with my medical care. I’m a different case and I would like everyone in our network to get something out of iConquerMS that relates to their own personal care.

I am passionate because we have an opportunity to really impact health and healthcare for people for MS and further by example, we can impact other medical conditions. I think that its about finding ways to impact health and healthcare in a way that involve the person in the process. We have opportunity to make a big difference instead of just working around the fringes of care for people with MS.

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If you haven’t already, I ask you to join Robert and me at iConquerMS and help us make a difference by including your voice and your needs in research. Robert McBurney is MAD About MS, and you can be too by joining iConquerMS.

Wishing you well,

Laura

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