Uploaded December 2024 | Updated September 2026, 1 week ago
At the 2024 RNDS, Dr. Monique Anderson provided an introduction to rare neuroimmune disorders and discussed their prevalence, highlighting the various conditions such as idiopathic optic neuritis (ON) and neuromyelitis optica spectrum disorder (NMOSD). The discussion moved into genetic mutations, explaining different types such as point mutations and germline vs. somatic mutations [00:01:49]. The presentation detailed genetic studies and associated risk alleles across various disorders, mentioning specific genes and their implications for each condition [00:04:35]. Further research by the speaker on idiopathic transverse myelitis was shared, including ongoing studies and potential future research directions [00:18:01]. Dr. Anderson concluded by answering questions from the audience [00:24:25]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
You can view the presentation slides here:
files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Anderson.pdf
00:00 Introduction and Overview
01:49 Understanding Genetics
04:35 Genetic Studies in Neuroimmune Disorders
07:01 Genetic Links in Specific Disorders
18:01 Research on Transverse Myelitis
21:47 Ongoing Research and Conclusion
24:25 Questions from the Audience
At the 2024 RNDS, Dr. Monique Anderson provided an introduction to rare neuroimmune disorders and discussed their prevalence, highlighting the various conditions such as idiopathic optic neuritis (ON) and neuromyelitis optica spectrum disorder (NMOSD). The discussion moved into genetic mutations, explaining different types such as point mutations and germline vs. somatic mutations [00:01:49]. The presentation detailed genetic studies and associated risk alleles across various disorders, mentioning specific genes and their implications for each condition [00:04:35]. Further research by the speaker on idiopathic transverse myelitis was shared, including ongoing studies and potential future research directions [00:18:01]. Dr. Anderson concluded by answering questions from the audience [00:24:25]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
You can view the presentation slides here:
files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Anderson.pdf
00:00 Introduction and Overview
01:49 Understanding Genetics
04:35 Genetic Studies in Neuroimmune Disorders
07:01 Genetic Links in Specific Disorders
18:01 Research on Transverse Myelitis
21:47 Ongoing Research and Conclusion
24:25 Questions from the Audience
![2024 RNDS | Mind-Body Connection in Rare Neuroimmune Conditions: Mental Health, Fatigue & Cognition
At the 2024 RNDS, Dr. Lana Harder and Dr. Natalie Escalante discussed the mind-body connection in rare neuroimmune conditions, focusing on the interplay between mental health, fatigue, and cognition [00:00:05]. They emphasized the importance of neuropsychological evaluations to assess cognitive functions and mood, helping to identify challenges faced by individuals with rare neuroimmune conditions and develop personalized treatment plans [00:01:34]. They also explored how mental health, fatigue, and mood disorders often overlap, stressing the need for tailored approaches to manage these symptoms effectively [00:07:49]. Throughout the presentation, they highlighted the value of community, self-care, and small daily actions to strengthen mental health and well-being [00:18:29]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
You can view the presentation slides here:
https://files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Harder.pdf
00:00:05 Introduction and Clinic Overview
00:01:34 Neuropsychological Evaluation and Approach
00:04:28 The Role of Mental Health in Neuroimmune Conditions
00:05:04 Fatigue, Mood, and Cognitive Overlap
00:09:22 Mental Health Strategies and Support Systems
00:23:10 Audience Questions and Discussion on Fatigue Management 2024 RNDS | Mind-Body Connection in Rare Neuroimmune Conditions: Mental Health, Fatigue & Cognition](https://i.ytimg.com/vi/bfwhH_kez6Y/mqdefault.jpg)
![1205. Voices of SRNA Volunteers | Part 1
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, Alexandra Goulimi and Angela Jackson joined Lydia Dubose of SRNA share their backgrounds and how they got involved with volunteering for SRNA [00:01:43]. Alexandra and Angela discussed their experiences with rare neuroimmune disorders and the support they found through SRNAs programs [00:13:41]. They also shared what they hope to see in the future related to rare neuroimmune disorders and SRNA [00:22:53] and offered advice for anyone who might be interested in getting involved [00:30:51].
Alexandra Goulimi was born in 1969 and lived in Germany until she moved to Greece in 2011. She has a background in Human Resources Development and holds a master’s degree in Sociology and a PhD in Communications. In 2009 Alexandra met the Human Design System and has been experimenting since then with making decisions guided by her body’s intelligence. In 2017 Alexandra was diagnosed with NMOSD. It was challenging to meet the initial shock and deal with the symptoms. She has navigated her NMO-journey guided in her decisions by her intuitive response. Alexandra’s experience of NMO has led her to a profound understanding and a deeper love of herself and life.
Angela Jackson has been a member of a book club for 20 years. She is also a published author. Angela was a VP of Account Management working for a software company responsible for Customer Success. On February 27, 2019, she woke up with a numb left thigh. 12 hours later she was paralyzed from the waist down, diagnosed with idiopathic transverse myelitis, and hospitalized. Her lifestyle changed: acceptance of the diagnosis, therapy, limitations, working from home, depending on others... Moving forward with a positive outlook on life, Angela joined SRNA, serving as a Peer Connect Leader and hosting the first Houston, Texas Walk-Run-N-Roll. Angela has an awesome family. She is thankful for loving and supportive family and friends. 1205. Voices of SRNA Volunteers | Part 1](https://i.ytimg.com/vi/by68gglWtog/mqdefault.jpg)
![2024 RNDS | Management of Sexual Dysfunction
Warning: This presentation contains adult language and content. It is not suitable for anyone under the age of 18.
At the 2024 RNDS, Dr. Frederick Foley explained the categorization of primary, secondary, and tertiary sexual dysfunction, particularly in the context of multiple sclerosis (MS) [00:01:00]. He highlighted the prevalence of sexual dysfunction in MS patients and the importance of healthcare providers discussing this issue with their patients [00:05:00]. Foley introduced various medical treatments and devices [00:15:00]. He emphasized the role of education in significantly improving sexual dysfunction in men and women [00:19:49]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Introduction to Sexual Dysfunction
00:16 Types of Sexual Dysfunction in Neuroimmunological Illness
01:37 Epidemiology and Neurology of Sexual Dysfunction in MS
03:09 Encouraging Communication About Sexual Health
06:43 Medical Management of Erectile Dysfunction
10:35 Sexual Dysfunction in Women
17:26 Intimacy and Communication Strategies
19:49 Case Study and Conclusion 2024 RNDS | Management of Sexual Dysfunction](https://i.ytimg.com/vi/bzro8as8vBY/mqdefault.jpg)

![2024 RNDS | Management of Spasticity
At the 2024 RNDS, Dr. Cristina Sadowsky discussed the nature of spasticity as an uncontrolled motor activity resulting from central nervous system lesions [00:01:34]. She explained the beneficial and disabling aspects of spasticity, emphasizing the importance of identifying triggers and appropriate treatments [00:10:20]. Various pharmacologic treatments and their potential side effects were detailed, along with non-pharmacologic interventions such as Botox injections and intrathecal baclofen [00:11:16]. Emerging treatments like cryoneurolysis and surgical options such as selective dorsal rhizotomies were also introduced as innovative approaches to managing severe cases of spasticity [00:20:10]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
You can view the presentation slides here:
https://files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Sadowsky_Spasticity.pdf
00:00 Introduction and Background
00:42 Understanding Spasticity
04:12 Beneficial vs. Disabling Spasticity
05:54 Measuring Spasticity
07:19 Common Triggers of Spasticity
11:16 Treatment Options: Activity and Medications
20:10 Advanced Treatments and Interventions
23:44 Surgical Options and Conclusion 2024 RNDS | Management of Spasticity](https://i.ytimg.com/vi/dIqC35TD6AM/mqdefault.jpg)
![1206. Voices of SRNA Volunteers | Part 2
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, titled, “Voices of SRNA Volunteers, Part 2,” Minaal Zahid and Doug Kirby joined Lydia Dubose of SRNA. Doug shared his journey with NMOSD, emphasizing the role of volunteers in providing support and education [00:01:49]. Minaal discussed her motivation to volunteer stemming from her brother’s diagnosis of NMOSD [00:02:42]. Minaal and Doug delved into their volunteer activities, including organizing events and contributing to educational resources, highlighting the impact of volunteering on both personal growth and community support [00:07:13].
Minaal Zahid is an incoming neurodevelopmental disabilities resident physician whose journey in medicine was shaped by her familys history of autism and NMOSD. She witnessed firsthand the challenges her family faced in obtaining a diagnosis for her younger brother, who struggled with NMOSD symptoms for nearly a year before diagnosis, resulting in the unfortunate loss of vision in his left eye. Assuming the role of caretaker as the eldest daughter, Minaal was inspired to pursue a career in neurology to assist families facing similar struggles with neurological disorders. This pursuit led her to SRNA where she is excited to educate the general public and her colleagues about rare neuroimmune disorders and help enact policy changes to better serve patients with neurological disabilities.
Doug Kirby has lived most of his life in Utah. After earning a degree in microbiology from BYU, he went to the University of Washington to gain his masters degree in environmental health science. Doug also spent two years in South Korea as a church missionary. He has been married to his wife Holly for 39 years, and they have 5 kids, all boys but the first four, and eight grandchildren. Doug spent the first ten years of his career in the environmental field working at two different hazardous waste disposal sites and then switched to information technology. During his career, Doug has been a developer and manager. He currently lives in Herriman, Utah where he and Holly are looking forward to retirement in a little over three years. Doug was diagnosed with NMOSD when he was 56 in 2017. His vision is fine, but he has some physical difficulties including numbness and trouble walking that he has learned to live with. Doug enjoys meeting with and learning from others who are going through similar challenges. 1206. Voices of SRNA Volunteers | Part 2](https://i.ytimg.com/vi/dOrgUoiN-gw/mqdefault.jpg)
![2024 TM Together | Community Q&A
During the 2024 TM Together online event, Krissy Dilger of SRNA was joined by Dr. Paula Barreras of Cedars-Sinai Medical Center and Dr. Hamza Coban of University of Connecticut Health Center. Dr. Barreras and Dr. Coban answered questions from the audience about transverse myelitis (TM), managing relapsing TM, diagnostic tests, and medications [00:07:15]. The doctors also delved into symptom management strategies for neuropathic pain, fatigue, and bladder and bowel dysfunction, emphasizing the importance of personalized treatment plans and ongoing care [00:23:40]. They concluded by highlighting the relevance of new research, particularly in stem cell treatments, and offered encouragement for people living with TM [00:48:05]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
Paula Barreras, MD is a board-certified neurologist with expertise in neuroimmunology. She is an assistant professor of neurology at Cedars-Sinai Medical Center in Los Angeles, CA. Dr. Barreras specializes in immune mediated conditions affecting the brain and spinal cord, including neurosarcoidosis and spinal cord disorders such as neuromyelitis optica, MOG associated disease, transverse myelitis, and their mimics.
Dr. Barreras completed her medical school at the University of the Andes, followed by a postdoctoral research fellowship in neuroimmunology at Johns Hopkins University. She completed her neurology residency and clinical neuroimmunology fellowship also at Johns Hopkins before joining the team at Cedars-Sinai Medical Center. Her research focuses on identifying predictors of final diagnosis after the initial diagnosis of myelopathy, as well as predictors of outcomes in myelitis and neurosarcoidosis.
Hamza Coban, MD is an assistant professor of neurology at University of Connecticut in Farmington, CT. He is a neurologist specializing in neuroimmunology disorders including multiple sclerosis, neuromyelitis optica spectrum disorders (NMOSD), and other rare autoimmune conditions affecting the central nervous system in adults and children. Dr. Coban received his medical degree from Hacettepe University School of Medicine in Ankara, Turkey. After medical school, he did a post-doctoral research fellowship at University of California Los Angeles and University of California San Diego, where he studied neurodegeneration and neuroinflammation in the setting of Alzheimer’s disease and HIV-associated dementia.
He completed his neurology residency at University of Connecticut in Farmington, CT, and served as Chief Resident in his last year of residency. After residency, he completed his fellowship training in neuroimmunology at University of Pennsylvania and Children’s Hospital of Philadelphia. Dr. Coban’s research focuses on the aging and transitional care of neuroinflammatory disorders from pediatrics to adulthood and adulthood to the elderly.
00:00 Introduction and Guest Introductions
01:29 Understanding Relapsing Transverse Myelitis
06:37 Recovery After Transverse Myelitis
12:07 Transverse Myelopathy vs. Transverse Myelitis
16:03 Symptom Management: Neuropathic Pain
22:55 Symptom Management: Fatigue
29:12 Symptom Management: Bowel Dysfunction
35:10 Aging with Transverse Myelitis
41:02 Current Research and Future Directions
53:28 Final Thoughts and Closing Remarks 2024 TM Together | Community Q&A](https://i.ytimg.com/vi/esjW3mJKKIg/mqdefault.jpg)



