Uploaded September 2025 | Updated September 2026, 1 week ago
In part six of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock, a family therapist from the UK's National Health Service, to discuss the role of siblings in families with a child diagnosed with a rare neuroimmune disorder. Barbara shared findings from her research on how siblings provide crucial support to parents and the positive impacts this has on family dynamics [00:04:31]. They explored the concept of parentification and the importance of assigning age-appropriate tasks to siblings [00:25:10]. Barbara also provided advice on fostering healthy sibling relationships and the significance of open communication [00:35:34].
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
Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's 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 King's 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 returntowellness.co.uk
00:00 Introduction
00:28 Meet Barbara Babcock
02:08 Theme Four: Support from Siblings
04:31 Siblings' Characteristics and Their Impact
06:57 Voluntary Help from Siblings
25:10 Parentification: Understanding the Concept
36:34 Fostering Healthy Sibling Relationships
39:20 Conclusion and Final Thoughts
In part six of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock, a family therapist from the UK's National Health Service, to discuss the role of siblings in families with a child diagnosed with a rare neuroimmune disorder. Barbara shared findings from her research on how siblings provide crucial support to parents and the positive impacts this has on family dynamics [00:04:31]. They explored the concept of parentification and the importance of assigning age-appropriate tasks to siblings [00:25:10]. Barbara also provided advice on fostering healthy sibling relationships and the significance of open communication [00:35:34].
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
Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's 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 King's 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 returntowellness.co.uk
00:00 Introduction
00:28 Meet Barbara Babcock
02:08 Theme Four: Support from Siblings
04:31 Siblings' Characteristics and Their Impact
06:57 Voluntary Help from Siblings
25:10 Parentification: Understanding the Concept
36:34 Fostering Healthy Sibling Relationships
39:20 Conclusion and Final Thoughts







![1203. Community Spotlight | Rick Telander
The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Rick Telander joined Dr. GG deFiebre of SRNA to talk about his journey with transverse myelitis (TM). Rick shared about his diagnostic process [00:08:05], the testing that took place, and the treatment and rehabilitation that he received [00:09:25]. He emphasized the importance of early diagnosis, research for better treatments, and support from organizations like SRNA [00:25:02]. Rick also discussed ongoing symptoms, his experience of living with TM, and the childrens book of poetry that he published [00:26:11].
Rick Telander is the Senior Sports Columnist for the Chicago Sun-Times. He is the author of ten books and was previously a senior writer for Sports Illustrated and ESPN, the Magazine. An original member of “The Sportswriters on TV” television show, Rick has been named Illinois Sportswriter of the Year nine times, and his work has been collected in over a dozen anthologies. He has been awarded the Sigma Delta Chi Award by the Society of Professional Journalists and the Dan Jenkins Lifetime Medal for Excellence in Sportswriting from the University of Texas. In 2021 he was inducted into the National Sportswriters Hall of Fame in Winston-Salem, North Carolina. Rick’s book, Sweet Dreams: Poems and Paintings for the Child Abed is available online:
https://www.skyhorsepublishing.com/9781510778337/sweet-dreams/ 1203. Community Spotlight | Rick Telander](https://i.ytimg.com/vi/NFk_-PyV5Hk/mqdefault.jpg)
![Community Meets Clinic 303. Dr. Benjamin Greenberg
The Community Meets Clinic podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode hosted by Krissy Dilger of SRNA, we met Dr. Benjamin Greenberg of the UT Southwestern Medical Center, which has been designated as a Center of Excellence in Rare Neuroimmune Disorders. He outlined research including a
stem cell program and immune-remodeling therapies for NMO aimed at reducing long-term immunosuppression [05:49]. Dr. Greenberg illustrated multidisciplinary care at UT Southwestern and Children’s Medical Center, emphasized options for second opinions and clinician-to-clinician remote consultation, and shared hopes for nervous system repair trials and curative immune therapies [07:18]. You can view Dr. Benjamin Greenbergs medical profile here:
https://utswmed.org/doctors/benjamin-greenberg/
Benjamin M. Greenberg, MD, MHS is a Professor and the Cain Denius Scholar in Mobility Disorders in the Department of Neurology [https://utswmed.org/why-utsw/departments/neurology/] at UT Southwestern Medical Center in Dallas, Texas. He currently serves as the Vice Chair of Translational Research and Strategic Initiatives for the Department of Neurology. He is also the interim Director of the Multiple Sclerosis Center [https://utswmed.org/locations/aston/multiple-sclerosis-and-neuroimmunology-clinic/] and the Director of the Neurosciences Clinical Research Center. In addition, he serves as Director of the Transverse Myelitis and Neuromyelitis Optica Program and the Pediatric Demyelinating Disease Program at Children’s Medical Center [https://www.childrens.com/specialties-services/specialty-centers-and-programs/neurology/demyelinating-disease-program].
Dr. Greenberg earned his medical degree at Baylor College of Medicine before completing an internal medicine internship at Chicago’s Rush Presbyterian-St. Luke’s Medical Center. He performed his neurology residency at the Johns Hopkins School of Medicine. He also holds an M.H.S. in molecular microbiology and immunology from the Bloomberg School of Public Health, as well as a bachelor’s degree in the history of medicine – both from Johns Hopkins. Prior to his recruitment to UT Southwestern in 2009, Dr. Greenberg was on the faculty of the Johns Hopkins Division of Neuroimmunology, serving as the Director of the Encephalitis Center and Co-Director of the nation’s first dedicated Transverse Myelitis Center.
Dr. Greenberg splits his clinical time between adult and pediatric patients at William P. Clements Jr. and Zale Lipshy University Hospitals, Parkland, and Children’s Medical Center. His research focuses on better diagnosing, prognosticating, and treating demyelinating diseases and nervous system infections. He also coordinates clinical trials to evaluate new treatments to prevent neurologic damage and restore function to affected patients.
00:00 Welcome and Guest Intro
01:41 Path to Neurology
03:50 Why Neuroimmunology
05:49 Research Focus and Trials
07:18 Clinic Team and Referrals
10:31 Self Care and Hobbies
12:17 How the Clinic Can Help
14:16 Hope for Future Therapies
15:56 Wrap Up Community Meets Clinic 303. Dr. Benjamin Greenberg](https://i.ytimg.com/vi/NMl06hvkRHc/mqdefault.jpg)

![1310. Prevention and Treatment of Skin Breakdown
Krissy Dilger of the Siegel Rare Neuroimmune Association (SRNA) was joined by experts Janet Dean, MS, RN, CRRN, CRNP and Florence Hanssen, RN to discuss skin health and the prevention of skin breakdown. The conversation covered the structure of the skin and how paralysis affects skin health [00:01:48]. Key topics included the role of daily skin checks, moisture management, and the importance of pressure relief [00:11:48]. They also reviewed how nutrition, rehabilitation, and technology can aid in the prevention and treatment of skin breakdown [00:17:51]. Lastly, the episode covered the signs of serious skin issues and when to seek medical attention [00:50:18].
Janet Dean, MS, RN, CRRN, CRNP attended nursing school at the University of Michigan, completing a master’s degree in parent-child nursing in 1979. She is a board-certified Pediatric Nurse Practitioner and is also a Certified Rehabilitation Registered Nurse. She has over 30 years of experience in the specialty of pediatric rehabilitation. Prior to becoming a nurse practitioner, Ms. Dean enjoyed 10 years as a staff nurse on a pediatric rehabilitation unit caring for children with physical and developmental disability. As a nurse practitioner for the International Center for Spinal Cord Injury, she specialized in the prevention and treatment of the common health consequences of pediatric spinal cord injury. The focus of her practice is on health promotion and health maintenance.
Florence Hanssen, RN is a nurse coordinator at the Kennedy Krieger Institute’s International Center for Spinal Cord Injury. She obtained her licensure in 1993, and her bachelor’s in nursing science from Ohio University in 2014. Her primary interests are in wound care and the continuous outpatient healthcare for those living with spinal cord injury/ disease. She earned her wound care nurse certification in 2023.
00:00:00 Introduction
00:00:17 Meet the Experts
00:01:48 Understanding Skin Structure and Function
00:03:59 What is Skin Breakdown?
00:05:49 Impact of Paralysis on Skin Health
00:08:15 Causes of Skin Breakdown
00:11:48 Preventing Skin Breakdown
00:14:00 Mechanical Injuries and Skin Health
00:16:21 Hygiene Practices for Skin Health
00:17:51 Nutrition and Skin Health
00:20:17 Rehabilitation and Skin Health
00:23:15 Preventing Pressure Ulcers
00:28:58 Managing Muscle Spasms
00:31:28 Identifying and Treating Minor Skin Breakdown
00:34:14 Understanding and Treating Minor Skin Irritations
00:36:24 Identifying Pressure Points and Vulnerable Areas
00:40:17 Managing Scrapes and Tears During Transfers
00:43:21 Preventing Skin Breakdown Under Braces
00:47:20 Addressing Skin Breakdown in Perineal Areas
00:50:18 Recognizing and Treating Serious Skin Breakdown
01:03:46 The Role of Technology and Resources in Skin Care
01:06:32 Final Thoughts and Advice 1310. Prevention and Treatment of Skin Breakdown](https://i.ytimg.com/vi/Nc0olVcowIg/mqdefault.jpg)