Uploaded January 2024 | Updated September 2026, 1 week ago
Roberta Pesce presentó programas educativos y de apoyo de SRNA, incluyendo la expansión de la organización a lo largo de los años, la creación de redes de apoyo, el desarrollo de recursos en línea, y la promoción de la investigación científica, con el objetivo de mejorar la calidad de vida de las personas con trastornos neuroinmunes poco frecuentes.
Trastornos Neuroinmunológicos Poco Frecuentes Simposio en Español 2023
Roberta Pesce of Siegel Rare Neuroimmune Association (SRNA)
Roberta Pesce presentó programas educativos y de apoyo de SRNA, incluyendo la expansión de la organización a lo largo de los años, la creación de redes de apoyo, el desarrollo de recursos en línea, y la promoción de la investigación científica, con el objetivo de mejorar la calidad de vida de las personas con trastornos neuroinmunes poco frecuentes.
Trastornos Neuroinmunológicos Poco Frecuentes Simposio en Español 2023
Roberta Pesce of Siegel Rare Neuroimmune Association (SRNA)


![1312. Parenting is Hard | Part 6
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 UKs 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 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
00:28 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 1312. Parenting is Hard | Part 6](https://i.ytimg.com/vi/Ixzhe0MXZTQ/mqdefault.jpg)







![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)