In this "Community Spotlight Edition" of "Ask the Expert," Landy Thomas of SRNA talked with Marie Abrego and Dr. Roopa Ramamoorthi about visual impairment and their collaborative book of poetry, Rare Visions, published through the Ipsen Foundation. Dr. Ramamoorthi shared her inspiration for the collection of work from individuals who have been diagnosed with rare diseases [00:02:35]. Landy read select poems from Rare Visions, and the guests offered personal insights into their adapted lives and the significance of accessible technology [00:08:57]. Finally, they discussed the importance of raising awareness about rare diseases and accessibility issues through poetry [00:31:05].

Roopa Ramamoorthi, PhD is a scientist in the field of global health and published poet as well as director for the Catalyst program and Invent fund at UC San Francisco. Her poetry essays and short stories have appeared in over 80 publication including various anthologies and "Perspectives" on NPR. Most recently, she conducted poetry workshops with people living with rare diseases. She feels honored to have now worked with those with rare eye diseases and to help send their voices out into the world. The poetry collections Rare Sounds and Rare Visions were published by the Ipsen Foundation:

https://www.fondation-ipsen.org/?s=Roopa+Ramamoorthi

Marie Abrego is proud to be the Welcome Manager for The Sumaira Foundation. Diagnosed with NMO in 2007 when she was only 14 years old, she shared the story of her diagnosis a few years ago, but as she learned, life doesn’t stop with NMO. In 2019, she joined The Sumaira Foundation as one of the first patient TSF Ambassadors representing the state of New Mexico.

00:00 Introduction

01:18 Meet Marie Abrego and Dr. Roopa Ramamoorthi

01:58 The Power of Poetry in Rare Disease Awareness

04:37 Challenges of Living with Vision Impairment

09:12 Adapting to Vision Loss: Tools and Techniques

14:14 Expressing Through Poetry: Marie Abrego's Work

21:21 Makeup and Femininity

22:33 The Emotional Impact of Blindness

25:20 Reading and Discussing Poems by Landy Thomas

33:29 Leah Campbell's Powerful Poems

38:21 Final Thoughts

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

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