SRNA Soundwaves

In this episode of "ABCs of NMOSD," host Landy Thomas, joined by Doug Newby, Heather Dawn Newbie, and Caitlyn Flickinger, discussed the impact of NMOSD on romantic relationships. The guests shared their personal experiences with relationships and how they manage living with NMOSD [00:02:27]. They also addressed how they met, support each other during treatment, and the importance of understanding...

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...

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger moderated a discussion with Dr. Shuvro Roy of the University of Washington and Dr. Catherine Otten of Seattle Children's Hospital. Dr. Otten elaborated on her work with child neurology and pediatric neuroinflammatory disorders, while...

In this episode of the SRNA "Ask the Expert" podcast moderated by Dr. GG deFiebre, Dr. Kyle Blackburn and Dr. Benjamin Greenberg discussed the need for updated diagnostic criteria for myelitis. Dr. Blackburn explained the term myelitis and the importance of precise terminologies for accurate diagnoses and research [00:05:10]. Dr. Greenberg elaborated on the advancements in testing and understandin...

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 pr...

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 part five 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 parenti...

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 fourth part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA continued her conversation with Barbara Babcock. In this episode, Barbara, a family therapist, discuss...

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 pa...

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 se...

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...

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 t...

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 i...

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 meet Dr. Monica Diaz of University of North Carolina Health. Dr. Diaz shared her journey into neurology and neuroimmunology, driven by her fascination with the brain and problem-solving [00:01:34]. She discussed h...

Krissy Dilger of SRNA moderated this "Ask the Expert" episode, “Pelvic Floor Therapy for Bladder and Bowel Management,” featuring Jessica Ekberg, a certified pelvic floor therapist. Jessica explained the various conditions treated by pelvic floor therapy, emphasizing the importance of posture and breathing [00:01:05]. She discussed how pelvic floor therapy is adapted for individuals with rare neur...

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 meet Dr. Michael Levy, a clinician from Massachusetts General Hospital. Dr. Levy is the Research Director of the Division of Neuroimmunology and Neuroinfectious Disease at Mass General and an Associate Professor a...

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. Sadowski shared her journey to become a physician and her focus on spinal cord injury rehabilitation [00:02:26]. She discussed the...

In this episode of "Ask the Expert," Dr. Eoin Flanagan joined Dr. GG deFiebre of SRNA. Dr. Flanagan explained how immunosuppressive medications impact the immune system and the efficacy of vaccines [00:02:45]. He discussed the primary concerns and risks of vaccinating individuals on these therapies, including avoiding live vaccines and the need for additional booster doses [00:04:52]. Dr. Flanagan...

In the "ABCs of NMOSD" episode, Landy Thomas of SRNA was joined by Heather Dawn Sowalla and Dr. Meghan Beier to discuss post-diagnosis body dysmorphia in NMOSD patients [00:00:12]. Heather shared her misdiagnosis journey, the impact of steroids, and her coping mechanisms [00:06:24]. Dr. Beier highlighted the importance of finding a supportive community and suggested strategies for managing new ide...

In this "Ask the Expert" episode, Dr. GG deFiebre of SRNA was joined by Dr. Rebecca Martin, who detailed the mechanism and benefits of transcutaneous spinal cord stimulation (TSS). Dr. Martin explained how TSS, a non-invasive method, aims to amplify spinal cord excitability and improve neurological functions like movement and sensation [00:01:25]. She contrasted TSS with implanted spinal stimulato...

In this "Ask the Expert" episode titled, "Women's Health within Neuroimmunology," Dr. Sonia Singh joined Krissy Dilger of SRNA to share women's health concerns within the context of neuroimmunology, focusing on issues like fertility and pregnancy for those with rare neuroimmune disorders [00:01:20]. Dr. Singh discussed how certain conditions, such as neuromyelitis optica spectrum disorder (NMOSD)...

In this "Ask the Expert" episode titled, "Self Identity and Finding Meaning Following Diagnosis," Krissy Dilger of SRNA spoke with Susan Y. Wegener, LCSW, a licensed clinical social worker, about coping with a chronic diagnosis and its emotional adjustments, referencing Kübler-Ross’ stages of grief [00:03:45]. Susan discussed the importance of self identity transformation post-diagnosis and the ne...

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. Jennifer Graves from UC San Diego Health. Dr. Graves shared her journey into neurology and neuroimmunology [00:02:14]. She discussed the multidisciplinary approach of her clinic at UC San Diego Health, emphas...

In the "ABCs of NMOSD" episode titled, "Managing the Dread of Relapse," Landy Thomas of SRNA was joined by Heather Dawn Sowalla. Heather shared her journey with neuromyelitis optica spectrum disorder (NMOSD) [00:01:54] and discussed the fear of relapse associated with the condition [00:14:04]. She described how long-term misdiagnosis and numerous flares impacted her life and mental health [00:16:0...

In the “ABCs of NMOSD” episode titled, “Social Reintegration Following an NMOSD Diagnosis,” Landy Thomas of SRNA and Kim Jackson-Matthews discussed social reintegration following an NMOSD diagnosis [00:00:14]. Kim shared her diagnosis story, including the onset of symptoms and the challenges she faced [00:04:42]. They talked about the emotional impact of the disease, how it changed Kim's life, and...

In the “ABCs of MOGAD” episode titled, “Meteoroid and cosMOG Clinical Trials for MOGAD Treatments,” Krissy Dilger of SRNA was joined by Dr. Michael Levy. They described MOG antibody disease and its similarities to NMO and MS, explaining current therapeutic options [00:01:56]. Dr. Levy talked about the cosMOG clinical trial, detailing the mechanism and potential of rozanolixizumab, and the criteria...