Ask the Expert Podcast Por Siegel Rare Neuroimmune Association (SRNA) arte de portada

Ask the Expert

Ask the Expert

De: Siegel Rare Neuroimmune Association (SRNA)
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The goal of our “Ask the Expert” podcast series is to share the latest research and information on rare neuroimmune disorders and provide an avenue for individuals diagnosed with these disorders and their family members to ask questions to experts who specialize in these disorders. The podcasts are moderated based on questions submitted by our community. We would like to hear from you. If there are topics that you would like us to address in our podcasts, you can share your thoughts by sending an email to info@wearesrna.org and please use SRNA Podcast in the subject.062634 Enfermedades Físicas Higiene y Vida Saludable
Episodios
  • 1305. FES 101
    Jul 8 2025

    In this episode of "Ask the Expert," Dr. Matthew Bellman joined Dr. GG deFiebre of SRNA to explain the basics of functional electrical stimulation (FES) and its applications. Dr. Bellman outlined how FES differs from other electrical stimulation techniques and its role in improving mobility for those with neuroimmune disorders [00:03:35]. He discussed the specific benefits of FES, including muscle strengthening and managing spasticity, and shared success stories demonstrating its impact [00:09:53]. Dr. Bellman also highlighted new developments in FES technology, particularly the integration of AI [00:33:28].


    Matthew Bellman, PhD is a Founder and the Chief Technology Officer for MYOLYN, Inc. Dr. Bellman is a Triple-Gator with bachelor’s, master’s, and doctorate degrees in mechanical engineering from the University of Florida (UF). In 2013, Dr. Bellman co-founded MYOLYN to commercialize his doctoral research on mobility assistance for people with paralysis and muscle weakness using functional electrical stimulation (FES) and robotics. In his time at MYOLYN, Dr. Bellman has been responsible for building a certified medical device quality management system, managing a team of engineers in the design and development of two Class II medical devices, obtaining grant funding from the National Institutes of Health (NIH), and growing a small business.


    Dr. Bellman has been awarded the Entrepreneurial Spirit Award by UF’s Center for Entrepreneurship and Innovation, the O. Hugo Schuck Best Paper Award by the American Automation Control Council, and the Outstanding Young Alumnus Award by the UF Department of Mechanical and Aerospace Engineering. In 2019, Dr. Bellman secured MYOLYN’s place as a finalist in the Toyota Mobility Unlimited Challenge. In addition to his role at MYOLYN, Dr. Bellman has also served as a member of the Board of Directors for NextStep Orlando’s Paralysis Recovery Center and as a member of the Advisory Council for the American Bionics Project. Dr. Bellman’s work has been published in high-impact scientific journals including Muscle & Nerve, IEEE Transactions on Control Systems Technology, and The Journal of NeuroEngineering and Rehabilitation, and he has been an invited guest speaker at universities around the world including UF, École Normale Supérieure (ENS) de Lyon, and the Tokyo Institute of Technology. When not at work, Dr. Bellman can be found trail running or relaxing at home with his wife and family.


    00:00 Introduction

    00:31 Meet Dr. Matthew Bellman

    00:52 Understanding Functional Electrical Stimulation (FES)

    01:30 Historical Context and Early Applications of FES

    03:35 How FES Works in the Body

    07:05 FES for Spinal Cord Damage and Neuromuscular Disorders

    09:53 Benefits of FES for Various Symptoms

    13:44 Evidence and Secondary Benefits of FES

    17:47 Typical FES Session and Accessibility

    24:06 Success Stories and Patient Feedback

    29:25 Barriers to FES Adoption

    33:28 Future Developments in FES Technology

    36:46 Final Thoughts and Encouragement

    Más Menos
    41 m
  • 1304. Parenting is Hard | Part 2
    Jun 30 2025

    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 second part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock shared more about her research on how parents navigate the needs of their non-diagnosed children alongside those of a child with a rare neuroimmune disorder. She described the demographic details of the participating families and the process of recruiting participants for the study [00:02:25]. Barbara highlighted her unique perspective and the potential biases she brought to the research as a non-parent [00:05:33]. She emphasized the importance of honesty and vulnerability in sharing experiences, as well as focusing on the strengths of families facing these challenges [00:09:46].


    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 www.returntowellness.co.uk


    00:00 Introduction

    01:29 Overview of Barbara's Research

    02:25 Participant Demographics and Methodology

    05:33 Researcher’s Perspective and Bias

    09:46 Themes and Insights from the Research

    12:24 Conclusion



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    15 m
  • 1303. Parenting is Hard | Part 1
    Jun 23 2025

    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 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 www.returntowellness.co.uk


    00:00 Introduction

    01:26 Meet Barbara Babcock: A Journey into Family Therapy

    02:20 Barbara's 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

    Más Menos
    29 m
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