Uploaded November 2023 | Updated September 2026, 1 week ago
At the 2023 Virtual RNDS, Paula Hardeman of UT Southwestern Medical Center joined Rebecca Whitney of SRNA to offer suggestions on practicing self-care and other strategies for caregivers to maintain their own health.
At the 2023 Virtual RNDS, Paula Hardeman of UT Southwestern Medical Center joined Rebecca Whitney of SRNA to offer suggestions on practicing self-care and other strategies for caregivers to maintain their own health.

![1307. Parenting is Hard | Part 3
At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submit
In the third part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock to further explore her research concerning the changing beliefs around parenting when a child has been diagnosed with a rare neuroimmune disorder. Barbara discussed how beliefs around being fair as a parent could change and the various sub-themes supporting this idea, including redefinition of fairness and the challenge of balancing attention among children [00:03:30]. She highlighted the impact of societal and historical contexts on parenting norms and the struggles parents face in managing new caregiving responsibilities and learning new skills [00:12:45]. The importance of redefining what it means to be a good parent in the context of a child with additional needs was emphasized throughout the episode [00:24:00].
Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdoms National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at Kings College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk
00:00 Introduction
00:27 Meet the Expert: Barbara Babcock
01:38 Exploring Parental Beliefs and Fairness
03:37 Balancing Attention Among Children
07:49 Cultural and Societal Influences on Parenting
11:08 Challenges in Managing Illness and Fairness
19:37 Learning New Skills and Roles
25:52 Redefining Good Parenting
27:43 Conclusion 1307. Parenting is Hard | Part 3](https://i.ytimg.com/vi/rxP73iY4HjA/mqdefault.jpg)
![2024 RNDS | Rehabilitation Strategies
At the 2024 RNDS, Dr. Christina Sadowsky, Dr. Clarice Sinn, Dr. Heakyung Kim, and Dr. Philippines Cabahug shared insights on the importance and timing of rehabilitation following a neuroimmune diagnosis [00:01:16]. They emphasized the need for immediate rehabilitation as soon as a person who is diagnosed is medically stable, and highlighted the importance of both physical and psychological aspects of recovery [00:02:45]. The panelists discussed how tailored rehabilitation plans, including exercise therapy, can aid in managing symptoms like spasticity, bowel, and bladder issues, and improve overall quality of life [00:09:35]. They answered audience questions from the audience and provided guidance on finding appropriate therapists for specific needs [00:17:18]. 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_Rehabilitation.pdf
00:00 Introduction and Panelist Introductions
00:49 Importance and Timing of Rehabilitation
02:18 Rehabilitation Approaches and Strategies
04:56 Holistic Rehabilitation: Beyond Physical Therapy
05:43 Addressing Common Rehabilitation Questions
09:06 Mental Health and Rehabilitation
17:18 Questions from the Audience
20:17 Adaptive and Alternative Therapies
33:51 Setting Rehabilitation Goals
39:00 Conclusion and Final Thoughts 2024 RNDS | Rehabilitation Strategies](https://i.ytimg.com/vi/skxn6nlPaH0/mqdefault.jpg)
![Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM)
Krissy Dilger of SRNA moderated an open Q&A on acute disseminated encephalomyelitis (ADEM) with pediatric neurologist Dr. Linda Nguyen of the University of Texas Southwestern Medical Center. Dr. Nguyen discussed how widespread MOG antibody testing has shifted many cases previously labeled ADEM to MOG antibody-associated disease, recommended MOG testing at onset, and reviewed relapse risk, mimics, and follow-up imaging [00:05:07]. Questions from the community covered acute treatments, recovery, guidance on pseudo-relapse, rehabilitation, and transition from pediatric to adult care [00:14:41].
Dr. Linda Nguyen completed her MD, PhD training at West Virginia University in 2017, and then pediatric neurology residency at the University of California, San Diego in 2022. She then completed a combined pediatric and adult neuroimmunology fellowship at the University of Texas Southwestern in 2024, where she now serves as an Assistant Professor in the Department of Pediatrics. Dr. Nguyen currently sees patients in the Demyelinating Disease Clinic at Children’s Medical Center Dallas.
00:00 Welcome and Guest Intro
01:08 What Is ADEM
01:51 Causes and Who Receives This Diagnosis
02:55 Early Signs and Onset
04:20 Diagnosis and MRI Criteria
05:07 MOG Antibodies and ADEM
07:21 Testing and Relapse Risk
09:06 Recurrent ADEM and Labels
12:34 Mimics and Differential Diagnosis
14:41 Acute Treatment Options
15:38 Recovery Timeline and Rehab
17:47 Long Term Effects and Seizures
21:23 Family Support and Accommodations
24:47 Follow Up Imaging and Relapse Signs
27:25 Managing Fatigue and Headaches
29:31 Supplements, Vaccines, and Genetics
33:40 Pseudo Relapse and Exercise Balance
37:41 Research and Predicting Outcomes
43:14 Transition to Adult Care
45:36 Weakness Sleep Issues and Final Thoughts Ask the Expert 1407. Open Q&A on Acute Disseminated Encephalomyelitis (ADEM)](https://i.ytimg.com/vi/tA7Mvb5d79s/mqdefault.jpg)




![201. Dr. Cristina Sadowsky
The Community Meets Clinic podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Cristina Sadowsky from Kennedy Krieger Institute in Baltimore, Maryland. Dr. Sadowsky shared her journey to become a physician and her focus on spinal cord injury rehabilitation [00:02:26]. She discussed the Kennedy Krieger Institute International Center for Spinal Cord Injurys comprehensive care approach, which includes long-term and specialized treatments for both pediatric and adult patients [00:07:00]. Dr. Sadowsky concluded with insights on what keeps her motivated and her hopes for advancements in the treatment of rare neuroimmune disorders [00:13:51].
00:00 Introduction
00:52 Meet Dr. Cristina Sadowsky
01:35 Dr. Sadowskys Journey to Medicine
02:41 Focus on Chronic Spinal Cord Injury Care
05:49 Research and Innovations in Spinal Cord Injury
07:32 Overview of the Kennedy Krieger Institute
14:38 Personal Insights and Self-Care
17:09 Advice for Patients and Families
20:49 Hopes for the Future of Neuroimmune Disorders
22:49 Conclusion and Acknowledgements
Born in Romania, Cristina Sadowsky, MD attended the Institute of Medicine and Pharmacy in Bucharest. She completed an internship and residency in internal medicine at Meridia Huron Hospital/Case Western Reserve University in Cleveland, OH. From there, she began a residency in physical medicine and rehabilitation at Barnes-Jewish Hospital/Washington University School of Medicine in St. Louis, MO. Immediately following the completion of her second residency, she began a fellowship in spinal cord injury medicine at Barnes-Jewish Hospital/Washington University School of Medicine. At the same time, she became a clinical instructor in the school’s Department of Neurology and later assumed an assistant professor in neurology in the Division of Rehabilitation, Spinal Cord Injury Unit. In October 2004, she moved to Baltimore, joining the Kennedy Krieger Institute as Director of the Paralysis Restoration Clinic in the International Center for Spinal Cord Injury. In March 2005, she became an assistant professor of physical medicine and rehabilitation at Johns Hopkins School of Medicine.
She frequently serves as an invited clinical scientific peer reviewer for the American Journal of Physical Medicine and Rehabilitation, Archives of Physical Medicine and Rehabilitation, Journal of Rehabilitation Research and Development, the Journal of Spinal Cord Medicine, Translational Research. She also serves as a section editor for Physical Medicine and Rehabilitation Reports. You can view the medical profile of Dr. Sadowsky here: https://www.kennedykrieger.org/patient-care/faculty-staff/cristina-sadowsky 201. Dr. Cristina Sadowsky](https://i.ytimg.com/vi/uTjQqYfRCZ8/mqdefault.jpg)
![1303. Parenting is Hard | Part 1
At the end of this mini-series, we will host a Q&A episode where Barbara Babcock will answer questions from the community. To submit your question, please visit https://srna.ngo/submit
In the first part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock discussed the challenges faced by parents raising a child with a rare neuroimmune disorder and the impact on non-diagnosed siblings. Barbara shared her personal journey with transverse myelitis (TM) and how it led her to conduct research on this topic [00:02:20]. She explored themes from her research, highlighting fairness in parenting, and the role of sibling support [00:13:03]. Finally, Barbara emphasized the importance of adapting parenting strategies to balance the needs of all children in the family [00:15:42].
Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdoms National Health Service. In her private practice, she works with individuals and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at Kings College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is www.returntowellness.co.uk
00:00 Introduction
01:26 Meet Barbara Babcock: A Journey into Family Therapy
02:20 Barbaras Personal Experience with TM
03:20 Creating Support Systems for Families
06:35 Research Focus: Parenting and Sibling Dynamics
13:03 Themes from the Research
15:42 The Importance of Fairness and Balance
18:38 Challenges and Guilt in Parenting
24:33 Conclusion 1303. Parenting is Hard | Part 1](https://i.ytimg.com/vi/uncptc08NLk/mqdefault.jpg)
