2023 Patient Education Symposium Recap!

2023 Patient Education Symposium:

Where we were, Where we are & Where we are going.

The 23rd Annual Tisch MS Research Center of New York Patient Education Symposium took place at the New York Hilton Midtown on March 19th, 2023.

Hundreds of attendees gathered to learn about the groundbreaking research and clinical updates on Primary Progressive MS, Relapsing-Remitting MS, Cerebral Organoids, and Epstein-Barr Virus.

A Breakthrough in Primary Progressive MS

Dr. Jamie Wong, research scientist leading the experimental neurology program at Tisch MSRCNY first reviewed her recently published research on Primary Progressive MS. The research, published in Brain, demonstrated that for the first time ever, PPMS is pathologically distinct from other forms of MS. Dr. Wong and Dr. Sadiq discussed the research, noting that when the team injected mice with spinal fluid from patients with different forms of MS, only mice injected with PPMS fluid demonstrated muscle weakness and other symptoms consistent with PPMS. The discovery confirmed that PPMS patients have antibodies in their spinal fluid that cause muscle weakness. Now researchers are able to focus on treatments to remove PPMS antibodies that are causing the damage.

A New Way to Study the Progression of MS

Dr. Nicolas Daviaud, an assistant research scientist at Tisch MSRCNY, discussed the center's creation of mini human brains called cerebral organoids. Dr. Daviaud's research has recently been published in Biology Open and noted that it was the first time cerebral organoid technology has been applied to MS. The cerebral organoids were created by taking the cells of patient's blood, allowing Dr. Daviaud to study how MS develops differently in patients based on their genetic background. Dr. Daviaud is also able to test how the organoids will react to a variety of environmental factors, providing a clearer picture of the role those factors play in disease progression.

The Tisch MSRCNY researchers plan to collaborate and utilize Dr. Daviaud's creation of "mini-brains" across various experiments in the Tisch MSRCNY lab.

Epstein-Barr Virus

Dr. Roberto Alfonso, assistant research scientist who directs his focus on the role of viruses and the development of MS, presented his work on EBV and the link between EBV and MS. Since all MS patients are first infected with EBV, Dr. Alfonso, is focused on studying the unique role the virus plays in MS. Specifically, he is examining why most people who have EBV do not develop MS, while some do. To do so, he is researching how cells taken from MS patients react to EBV as compared to those who do not have MS. This research is ongoing and will help us understand the cause of MS, an important step in reaching a cure. Jerry Lin also participated in the discussion regarding EBV and its connection to MS. Dr. Sadiq and Jerry Lin reflected upon the overarching goal of finding the cause of and cure for MS.

Clinical Presentations

The strong relationship between the Tisch Center’s research and its clinical practice, the IMSMP, was also front and center at the Symposium. Dr. James Stark and Dr. Armistead Williams III spoke about the latest treatments in MS and how they are working closely with the researchers to inform their approach.

PPMS with Dr. Stark

Dr. Stark presented a clinical update on Primary Progressive MS. He reviewed the clinical differences, including sex, age of diagnosis, presentation, MRI and course/treatment response. Dr. Stark also presented treatment possibilities for PPMS, which will relate to the work our researchers are doing in the Tisch MSRCNY lab.

RRMS with Dr. Williams

Dr. Williams presented a clinical update on Relapsing-Remitting MS. He first explained RRMS in the past vs MS today and the advancements that have been made in diagnosis and treatment. Dr. Williams reviewed the steps he takes to assess each patient and decide upon the best next steps for that particular patient, as well as develop a plan moving forward.

Phase II Stem Cell Trial

Dr. Violaine Harris is a senior research scientist and she directs the stem cell program at Tisch MSRCNY. At this year's Symposium, a short video highlighting the origins of the stem cell program was presented to the audience. Dr. Harris then joined the stage alongside Dr. Sadiq to discuss the results of the trial and what implications the results may have for MS patients.

The Tisch MSRCNY team will be presenting the final results of the Phase II Stem Cell Trial at American Academy of Neurology (AAN) in April. Following the conference, we will formally share the results with our community and review next steps.

Patient Profile: Robbin Cartier

 The team welcomed Robbin to participate in a Patient Profile at this year's Symposium, highlighting her journey as a patient at the IMSMP with a diagnosis of Primary Progressive MS. She shared that she is a musician and a music teacher-which she takes great pride and joy in. Robbin also shared that she finds strength in her support system, mentioning one of her fellow patients and friends as a primary supporter. Robbin explained that having a strong, supportive team-specifically a supporter or "buddy" that understands MS is an extremely valuable relationship to have. Robbin was a bright light at the Symposium and we are inspired by patients like Robbin each day.

Patient Profile: Darlene Ramos

Yadira and the rest of the team were thrilled to invite Darlene to participate in a Patient Profile, where she was able to share the story of her journey as a patient diagnosed with Relapsing-Remitting MS. As a patient of the IMSMP, a mother, and a career driven woman, Darlene shared some of the challenges she has faced, and the tremendous accomplishments she has made since she received the diagnosis of RRMS. She discussed the process of beginning her care at the IMSMP, starting a family, and completing her career goals-despite the diagnosis. Darlene noted that the support and resources she receives from the IMSMP attribute to her overall health and wellness. We are grateful to have had such a wonderful person share her story!

Patient Profile: Lauren Louth

We were excited to invite Lauren to participate in a Patient Profile to highlight her journey as a patient at the IMSMP, a Phase II Trial participant, a mother, and a nurse. Lauren shared her story of first receiving the news that she qualified for the Phase II Trial, what being a part of the study entailed, and the physical and mental changes she feels after completing the trial. She discussed going back to work full time as a nurse, her incredible support system and her appreciation for being selected to be a part of the trial. Lauren expressed excitement for the future of MS research, while instilling hope and reassurance by sharing her story. The Tisch MS Research Center of New York, as well as the IMSMP are thankful to have had such a dedicated and positive participant in the Phase II Trial.

Future Priorities of Tisch MS Research Center of New York

At the close of the Symposium, Dr. Sadiq shared upcoming research priorities for the year ahead. These included furthering Dr. Wong’s work to determine how antibodies cause disease in PPMS patients; leveraging the organoid model to advance understanding of EBV, cognition dysfunction, and brain atrophy; establishing a spinal cord organoid model to better understand the transition from Relapsing Remitting MS (RRMS) to Secondary Progressive MS (SPMS); among other priorities.

The goal has and continues to be-create a future without MS. This could only happen by continuing the groundbreaking research initiatives taking place at the Tisch MS Research Center of New York by the dedicated and collaborative team.

Thank you to our speakers, patient participants, Board of Directors, donors, and all of our attendees. We are so excited to have shared some of the incredible research accomplishments our team has made.

We look forward to accelerating the pace of our research to reach the goal of creating a future without MS.