The next generation in MS research: An interview with Dr. Sabeen Lulu

The National MS Society seeks to attract and train promising young investigators and doctors into the field of MS by supporting the training of postdoctoral fellows in studies related to MS. The Society is currently supporting 72 fellowships and early career awards, representing a total of $13 million in commitments. In fact, from its humble beginnings — funding six fellows in 1955 — the Society’s research fellowship program has trained more than 800 scientists, clinicians and medical professionals in the field of MS research.

With the increasing number of new therapies being developed for use in MS, there is a particular need for physicians trained in conducting clinical trials. To this end, the Society established the Sylvia Lawry Physician Fellowship Program in honor of our founder. This program provides doctors with up to 3 years of formal training in key elements associated with conducting clinical trials in MS. We sat down with Sylvia Lawry Physician Fellow, Sabeen Lulu, MD, to discuss the work she's doing with MS research leader Dr. Emmanuelle Waubant to design studies that will look into the challenges faced by children and adults living with the disease. 

How did you get involved in MS research?

My interest in multiple sclerosis actually started when I was a medical student. My best friend was diagnosed with MS while I was in med school. I was just learning about MS and was fascinated by the disease and the fact that at that time we knew so little about it. As I learned more about the environmental and genetic risk factors of MS, I couldn’t help but think about how, as we had grown up together, we had been exposed to the same things yet ended up with such different outcomes.

That was quite a while ago, and at the time there were only two treatment options. As I got more involved with patients, I saw how much MS affected the quality of life of younger people in particular. I became interested in MS research with the hope that I would be able to contribute to improving their outcomes and quality of life.

What types of research do you focus on?

Currently, I’m involved in a few different clinical trials at the University of California San Francisco (UCSF). I also have a few projects focused on pediatric MS – one of which is funded by the National MS Society. That project is looking at adherence of children with MS to their therapies. I’m also involved in clinical research looking at cognitive changes in children with MS. Children with MS represent  a unique population for research. Not only do they have disease onset at a younger age, suggesting higher risk factors, but they are also likely closer to the precipitating event.  A better understanding of pediatric MS may also help us determine possible risk factors for all people with MS.

What excites you most about the research you do?

While we’ve come a long way, there’s still so much to learn about MS. It’s important for me to be able to tell my patients that we’re working hard to find the answers and make changes that will improve their lives. I also try to think about it from their perspectives. As researchers, we often focus on trying to find out what causes MS, while my patients care more about finding a cure. But to get there, I think we really need to start by looking at things that can be prevented. I find the vitamin D research particularly interesting. We may find out that something as simple as supplementing your vitamin D may be very beneficial to you and may even prevent relapses. It’s very rewarding to be able to tell my patients, “this is what we know, and this is what we’re working on.”

I find it so interesting to look back at where we were 20 years ago and how much more we know now. At that time there were no treatment options to offer; now I spend an entire office visit discussing all the treatment options that are available and finding a treatment course that is tailored to the each particular person. Even in the short period of time during my fellowship training, two new meds came on the market, which is very exciting. And things keep coming – it seems like every year we have one or two new treatments. I can’t think of any other field where that is happening.

Are there specific questions that you’re trying to answer through your research?

I am currently involved in multiple clinical trials that once completed will improve our understanding of different drugs available and their efficacy in different types of MS.  I am also interested in better understanding the cognitive deficits that occur in children with MS, which is interestingly more pronounced in children than adults with MS. If you think about it, adults have already acquired all their skills and are basically maintaining them. Children with MS, on the other hand, are still learning and acquiring skills. We don’t yet know what they will experience 20 years from now, but we see changes in their current school performance. When I think about the deficits these kids will have acquired by the time they reach 30, it makes it more urgent to find answers and improve their lives. It may be as simple as ensuring they adhere to their therapies. We know how hard it can be for adults to consistently take their meds (particularly injectables), so you can imagine how much harder this can be for children. Understanding  these deficits and how to characterize them would be informative to provide a more targeted approach to handling cognitive difficulties, and suggestions

Do you have any advice or information for people who are considering participation in a clinical trial?

From the researcher’s perspective, it’s very important that we focus on ethical approaches for the patients. Twenty years ago, people used to perform trials where they would test a medication against a placebo. Right now, if we’re going to test a medication in people with relapsing MS,  that approach would not be ethical without informing people that there are approved treatment options for their type of MS; you can’t leave a patient untreated. We put a lot of thought into creating study designs that aren’t going to harm people. We provide detailed discussions and consent forms to review all study risks prior to participation in the study. While in a clinical trial, we monitor people closely, and if we see anything concerning in a particular participant, we remove them from the study.

If you’re considering participation in a clinical trial, it’s important that you understand the particular trial you’re participating in and the medication that is being tested. When you’re enrolled in a study, you’ll meet with the study coordinator and have the opportunity to ask questions. I encourage people to ask a lot of questions. It’s also important that you discuss the trial with your clinician to make sure that the treatment being tested is a good fit for you and your MS.

Participating in a clinical trial also has its advantages. Whereas most people with MS are seen once or twice a year by an MS specialist, trial participants are often seen every month or every three months. You often have access to a lot of cutting-edge technology as well. For example, you may get MRI scans at a much higher quality than is available commercially. And, if a study medication is approved by the FDA, pharmaceutical companies may offer a year of free treatment to participants after the trial. Each study is different, so it’s important to ask up front what care will be made available to you. More importantly as a participant in a trial you are contributing to expanding our knowledge and can benefit other patients with MS as well.

Is there anything else you’d like people with MS to know?

I think people with MS should be really optimistic. We’ve come a long way and we’re on the right path to continue to better understand MS as a disease. I also think in addition to taking your prescribed therapy, it’s important that you play an active role in taking care of your own health. Things like exercise are very important. This can be challenging for people who experience fatigue, but has so many benefits. I also recommend that you take vitamin D, and work with your clinician to find the dose that is right for you. I try to encourage my patients to live their lives as best they can. You can do most things you did before MS with the right accommodations.
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    15 Comments

  • Irmajean Mendoza   Sep 17, 2013 5:10 PM
    Would like to know if she is aware of trials involving stem cells. A Dr.Burt at Northwestern U is one physician looking at this. To me it sounds promising but is not yet available.
  • LAURIE ELISE GARVIN   Sep 18, 2013 8:45 AM
    I am excited about anyone who is doing research I would like to be involved with any research
  • LAURIE ELISE GARVIN   Sep 18, 2013 8:45 AM
    I am excited about anyone who is doing research I would like to be involved with any research
  • Janice Devereux   Sep 18, 2013 2:31 PM
    Anything new regarding treatment of chronic progressive form of MS?
  • Avatar
    Bobo  Sep 18, 2013 3:35 PM
    Thanks for doing the research necessary to answer questions that have been unanswered for decades. At 66, nearly 67, diagnosed with relapse/remission variety of MS, can I volunteer to serve as a participant in research? I'm doing fairly well day to day, but have some cognitive issues at times.
  • Sabeen Lulu   Sep 19, 2013 10:24 AM
    Hi everyone,

    It's wonderful to have motivated patients who are eager to participate in clinical trials. Without your participation we would not be able to advance our knowledge. There are numerous ongoing trials at this time depending on your location. I would suggest checking with your neurologist for a referral to an institution involved in research and then talking to the research team. They will guide you about ongoing studies.


    As for stem cell research it is an exciting field however done only at selected locations. At this time it is still under study and carries high risks. Again, I would recommend discussing this with your neurologist or MS specialist prior to participation to see if you are a good candidate.
  • Pamela Cooley   Oct 2, 2013 12:04 PM
    I have seen numerous Neurologists since 2010. I started falling a lot, fatigued, Cognitive skills were diminishing, balance issues and etc. MRI's showed early deymelinatation of the myelin sheath and lesions on the brain. I have had a lot of head trauma thru out my life due to being involved in MVA's. I also have Spinal Stenosis. I have been told I have Relapsing MS, then told I do not. My younger sister had MS and passed six years later due to complications. Same situation. The doctors never put her on any MS meds, just comfort treatments. This is what I am dealing with also. My youngest daughter has been diagnosed with MS and she refuses to take the medications. What is wrong with this picture? My husband left me because he got tired of helping me. I have episodes of incontinence during sleeping hours. How can I get my Neuro doctor to listen and observe my situation? I was a nurse for over twenty-five years. Something is wrong here.
  • Pamela Cooley   Oct 2, 2013 12:05 PM
    I have seen numerous Neurologists since 2010. I started falling a lot, fatigued, Cognitive skills were diminishing, balance issues and etc. MRI's showed early deymelinatation of the myelin sheath and lesions on the brain. I have had a lot of head trauma thru out my life due to being involved in MVA's. I also have Spinal Stenosis. I have been told I have Relapsing MS, then told I do not. My younger sister had MS and passed six years later due to complications. Same situation. The doctors never put her on any MS meds, just comfort treatments. This is what I am dealing with also. My youngest daughter has been diagnosed with MS and she refuses to take the medications. What is wrong with this picture? My husband left me because he got tired of helping me. I have episodes of incontinence during sleeping hours. How can I get my Neuro doctor to listen and observe my situation? I was a nurse for over twenty-five years. Something is wrong here.
  • Patsy Bassett   Oct 17, 2013 12:47 PM
    I was on the Tysabri infusion for almost 7 years. Recently I had to go on Tecfidera due to the PML virus and the increased risk. I feel more and more fatigued which is disheartening. I exercise 3-4 times a week either light aerobics or yoga. Any opinion about Tecfidera?
    Thank you for the interesting article.
  • darla   Oct 17, 2013 7:23 PM
    Please start doing research for progressive MS it seems that those of us who have the progression that they are no help for us yes we still take the shots but they don't help with the disease per say I know it was suppose to help the lesions from growing but every year they tell me that mine is doubling so in that case it would mean by now I have well over 100 lesions as I had over 55 in 2010
  • Randall   Oct 19, 2013 8:04 AM
    My wife was hit hard with MS at age 49. Her eye sight was afected first. It went down hill from there. Balance is a big problem. Falling, she has broken bones and has phisicly brused herselve so bad I was afraid I would of be looked at as if I was a wife beater. My heart is so broken to see her so disable.
    Finaces is a big problem. I can not afford to make modifications to my home to help with her needs. It's great to hear research is happening.
  • Linda   Oct 25, 2013 2:06 PM
    74 yr old and living with MS..I do have a family that understands..Exercise and pushing is so important....Keeping a Positive attitude is so # one.
    Thanks for all your research and I would me happy to help with any studies.
  • Linda   Oct 25, 2013 2:06 PM
    74 yr old and living with MS..I do have a family that understands..Exercise and pushing is so important....Keeping a Positive attitude is so # one.
    Thanks for all your research and I would me happy to help with any studies.
  • Linda   Oct 25, 2013 2:06 PM
    74 yr old and living with MS..I do have a family that understands..Exercise and pushing is so important....Keeping a Positive attitude is so # one.
    Thanks for all your research and I would me happy to help with any studies.
  • Frank Martinez   Oct 25, 2013 7:55 PM
    Does anyone out there experienced cronic headaches, maybe migraine headaches that do not go away? My wife was diagnosed with MS 14 years ago and for the last 4 years has been getting daily cronic headaches. The severity has increased over the years to a point where now she has a bad headache everyday all day long. Her neurologist, PCP, other specialists have not been able to find any relief for her.