For our third time together this year, I walked down the hall of the second floor of the Hilton LAX, Los Angeles, California, with our Director of Blind Resources, Andrea Mitchell, her husband James and guide dog, Indy, official MOG Dog of The MOG Project. Indy, the star of any gathering, led Andrea through the crowd like the professional he is. With his working gear off, he’s a loving playful pup, but when suited up, he is clearly on duty and ready for instructions.
With MOG Gear in hand, we were ready to set up our booth at the Siegel Rare Neuroimmune Association’s (SRNA) Rare Neuroimmune Disease Symposium (RNDS) 2022. Turning the corner, we were greeted by GG DeFiebre, smiling as always. Hugs were exchanged and there was a flurry of words about our excitement to start this great weekend. We soon ran into Chitra Krishnan, whose leadership of the SRNA has been pivotal in creating an organization that helps thousands of people with rare neuroimmune disorders on a daily basis. Her warm welcome and bright smile greeted us and offered direction to get started on our educational experience as well as the opportunity to offer help for others with MOGAD.
It wasn’t long before we ran into Sandy Siegel, who founded the organization many years ago with his wife Pauline What a lovely man he is. We had a wonderful conversation surrounding the early work he and Pauline did to start this amazing organization and how The MOG Project as a collaborative partner has an important role in our like missions. His passion for this work as well as his compassion for others continues to show us the best in humanity.
The first day was just a half day, but we certainly felt satisfied when it was over. The focus of this day was a “Guess the Diagnosis” activity led by Dr. Benjamin Greenberg, a neuroimmunolist and researcher of rare neuroimmune conditions from UT Southwestern Medical Center. Five patients with different diagnoses told their stories, made us swell with tears, and challenged our knowledge of rare neuroimmune disorders. It also illustrated the commonality in symptoms and patient experience in these disorders. At the end, their final diagnoses were revealed, and we all patted ourselves on the back for our correct calls.
During the times designated as “Connect” times, we manned our booth as well as the virtual booth. We were pleased to connect with patients, medical professionals and industry partners. Overall, we were able to meet many and have insightful conversations that we never would have otherwise. We were happy to see some who we know from our support groups and who have written their story in our MOG Blog and hear how they have been doing. Many thanks to our Director of MOG-AD Resources and Advocacy, Peter Fontanez, as well as our collaborative partner, Scott Tarpey, from MyMyelitis.com, a UK-based blog and educational site for MOGAD patients, for manning the booth and engaging throughout the weekend with MOGAD patients who stopped by.
Day two rolled around quickly and the coming discussion was led by Dr Benjamin Greenberg, who as usual made us laugh as only he could do. Benji, as Mikey (Dr. Michael Levy) calls him, did a great job and we enjoyed the fun pokes those two had at each other, which we understand has been going on for years as they have been friends for a long time. We were filled with interesting talks about managing neuropathic pain, the long-term treatments in NMOSD and MOGAD. and notably a talk by Dr. Michael Levy, a neuroimmunologist and researcher from Massachusetts General Hospital, on clinical trials in MOGAD and NMOSD. This talk left us with great hope for future treatments coming down the line as well as a possible curative treatment called tolerization, which aims to either kill or disable the MOG antibody or teach the body to ignore it. Neuropathic pain and spasticity management updates were also discussed. They split the next set of talks according to “Tracks” which were divided into 3 different types depending on where a patient is in their journey. Talks on early rehabilitation strategies, advice on building a healthcare team, transitioning from hospital to home, pediatric mental health, therapy for retaining function and transitioning from childhood to adolescence to adulthood were offered. And of course, questions were taken throughout the day from online participants as well as on site participants. The day ended with an open panel discussion with Dr. Benjamin Greenberg, Dr. Carlos Pardo, Dr. Michael Levy, Dr. Eoin Flanagan and Dr. Grace Gombolay who answered questions from the audience and prompted trending topics in rare neuroimmune disorders.
Day three was filled with a full day of information for patients trying to live with their diagnosis: cognition, depression and general quality of life, coping with grief, anxiety and loss, bladder, bowel and sexual dysfunction and adaptive tools and technology for improving quality of life. Notably, there was a research update on tele-neuropsychology and neuropsychological outcomes associated with MOGAD.
After a break for lunch and the opportunity to talk to patients of ADEM, NMOSD, TM and MOGAD, where we discussed our similar experiences, we jumped right into an afternoon of informative educational talks on adapting to and embracing disability where GG DeFiebre led a panel discussion of herself and 3 other individuals who have experienced changes in their lives that have left them disabled. They gave us their insight on how they have adapted and learned to live full lives despite this abrupt and impactful change from the after-effects of these diseases. Their outlooks were all positive and we understood that there still needs to be more done to build a world of accessibility where they can participate in just about everything. We then spent some time learning about insurance and what some of the terms mean as well as what choices are out there. One thing we would have loved to hear about in this talk was a breakdown of the appeals process as well as how the peer-to-peer option works for those patients who have been denied treatment options.
The next presentation was given by Kyle Blackburn, a neuroimmunologist from UT Southwestern Medical Center, on the “Know RND” and the CORE TM Registry, which are registries being set up there for research in rare neuroimmune conditions. Following this was a really interesting presentation on the association of rare variants in genes of immune regulation with pediatric autoimmune CNS disease. It was fascinating to see that while much more research needs to be done, there are some of these rare variants that maybe play a role in MOGAD as an associated immune dysregulation condition and as a relapsing biomarker in MOGAD. After a short break, Dr. Cynthia Wang, a neuroimmunologist from UT Southwestern Medical Center, discussed new insights on ADEM. These talks as well as all talks from previous days will be available via the SRNA website, so please check them out when they are available.
We finished the day with an open Q&A session and everyone scurried out after goodbye hugs. All in all, we caught up with old friends, greeted new ones with open arms and made invaluable connections for The MOG Project in order to serve our community of tenacious hummingbird warriors, well into the coming months. We thank the SRNA for their generosity in allowing us to participate in this event and look forward to our continued work together, collaborating on projects and bringing the best we can to patients who suffer from these diseases.