The Consortium of Multiple Sclerosis Centers (CMSC) annual conference brings together thousands of MS clinicians, researchers, and organizations to share the latest science and advances in MS care. We recently followed up with iConquerMS and RIDE Council member Nora Gutierrez after her first CMSC experience to hear her reflections on what she saw, what moved her, and what she felt was still missing from the conversation.

What was it actually like to be “in the room” as someone living with MS?

I got really emotional that all these professionals are evaluating my illness from different perspectives to improve the overall life of people living with MS. Every meeting room I entered, I felt at home, in the sense that the discussions and presentations were specific to MS. I did not have to explain my illness or symptoms; the professionals understood my MS journey.

There were so many sessions presenting topics simultaneously that I had to prioritize which ones were my top concerns. I attended sessions that were personally relevant to me: biomarkers and prevention, integrating wearables, incorporating the patient voice, cognitive impairment, the safety of cladribine in older patients, and the power of research. I did not intend on asking personal questions, but I was ecstatic that I was able to get a clear and exact answer to my personal situation.

Researchers and clinicians talk about MS all day at these conferences. What was your experience of that, as someone actually living with it?

In all the sessions I attended, I heard very common terminology and MS diagnostic exams and tests from office visits . It reminded me of all the different neurologist offices I had visited. I obtained a better understanding of the reasons studies were designed, what the research questions were, and the specific details than I expected. I felt I had firsthand experience from the researchers themselves.

But I did not see research topics that represented the voice of an MS patient from any underrepresented group, much less a Hispanic female. I also did not see studies focusing on underrepresented MS populations, or persons living in rural areas and their lack of access to specialized MS care, nor sessions about how to engage persons living with MS as research participants from the beginning.

What would you want iConquerMS members and others in the MS community to understand about why events like CMSC matter to them — even if they’ll never attend one?

CMSC may have areas where improvement is needed, but I am very grateful that such events exist. All of these professionals have chosen to focus their time and efforts on understanding MS, reviewing its impact on the MS patient, helping clinicians apply research findings in practical situations, learning new medical interventions, and enhancing the daily activities of MS patients. Based on the research outcomes presented at CMSC, the clinicians who attend can incorporate those findings into their practice to benefit the overall well-being of their MS patients.