Demystifying NMO & MOG

In this episode, host Chelsey chats with NMOSD patient and pediatric hematologist Dr. Joanna Robles about her unique perspective and experience obtaining her NMOSD diagnosis. In their discussion, they review:

• Important considerations for clinicians who make the NMOSD diagnosis and provide car

• Overview of the educational and training pathway for clinicians, including neurologists

• Review of the International Diagnostic Criteria for NMOSD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515040/

• Highlight the importance of a swift and accurate NMOSD diagnosis for appropriate treatment and management

Stay turned for a follow-up part 2 episode, in which Chelsey will chat with another NMOSD patient on 'After the NMOSD Diagnosis: Controlling What You Can.'

Embrace your inner nerd with host and CBJF scientific advisor Chelsey (PhD immunologist) as she reviews the emerging science and hot topics recently shared at the virtual European Committee for the Treatment and Research in MS (ECTRIMS). This is a major scientific meeting where clinicians and scientists in the field of central nervous system (CNS) diseases/disorders meet to share their recent data and findings with each other. Chelsey breaks down 4 buckets of NMOSD-related research topics:

1. NMOSD- and MOG-associated disorders: overlaps and distinctions

2. Unraveling complexities of NMOSD

3. Data updates on currently FDA-approved NMOSD treatments

4. Neurodegeneration and demyelination in the CNS: Potential treatment targets in neuroregenerative processes

Feeling the heat this summer?! People living with NMOSD/MS can experience sensitivity to temperature, particularly extremely hot or cold temperatures. In this episode, Chelsey chats with TSF ambassadors Julie Aldridge and Alexis (aka Lexi) Marta about their experiences living with NMOSD and managing temperature sensitivity. They cover:

• Impact of heat on NMOSD symptoms aka Uhtoff's phenomenon

• Heat-related symptoms vs relapse

• Managing heat, especially on a hot summer day

• Where to find at-no-cost cooling vests

• Impact of cold on symptoms and how to manage

In this episode, we focus on a rare population: men with NMO! NMO overwhelming affects women compared to men, and we wanted to tap into the male outlook and experiences living with NMO. Host Chelsey is joined by her brother, Connor Judge, a 28 year old man living with NMO to share his male perspectives:

• What’s it like to be in a sea of women?

• How does NMO and treatments impact identity?

• What are the differences between the societal image of being a man vs being a man with NMO?

• Adapting to work and earning income before and after NMO?

• What's it like to date and talk about NMO to potential partners?

• How do you manage relationships with friends and family?

In this episode, host Chelsey gets candid on all things related to women's health and NMOSD with Sumaira Foundation Ambassador Chelsey Tucker (TN) and Dr. Tamara Kaplan, neurologist at Brigham and Women's Hospital and associate neurology professor with Harvard Medical School. Topics covered are body image and emotional well-being, NMO treatment impacts on sexual identity, effect of NMO on periods, fertility & family planning, as well as the economic impact of navigating life as a woman with NMO. Dr. Kaplan and Chelsey T, both moms, also provide their insights on motherhood through NMO. Listen along to find out how you can befriend your 'inner mean girl' and empower your sense of identity and femininity.

In this episode, Sumaira Foundation for NMO Patient Ambassadors Julie Aldridge, Kristen Hewitt and Alexis Marta share with host Chelsey their experiences navigating relationships with NMOSD. Together, they take a personal look at how NMO has shaped their friendships, ties with family, as well as with co-workers, classmates and professors. They discuss the strengths of communication, honesty and advocacy in their relationships, and how NMO has amplified them.

The Covid-19 pandemic has ravaged the world, and while we're going through another dark surge, there is hope- vaccines. The FDA just authorized and approved the first Covid-19 vaccine. While this is exciting, it also brings up a lot of questions, especially for people in the NMO community. In this episode, host Chelsey, PhD immunologist, chats with Sumaira on the basics of vaccines, and then talks with neuroimmunologist and NMO clinician Mary Rensel, MD of the Cleveland Clinic Mellen Center. Sumaira and Chelsey cover the basics on vaccines: What are vaccines? What's protective immunity? What's herd immunity? What're the types of vaccines? What's the Covid vaccine timeline of distribution look like?

Dr. Rensel offers her clinical insight to discuss general vaccine considerations and recommendations for the NMO community, including: What are vaccine recommendations for NMO patients? Do NMO treatments affect vaccine response? Or safety concerns? Is there an effect of vaccines on NMO relapse?

Please remember that the goal of this podcast is to educate and empower you to make the most informed decisions with your health care provider. This is not medical advice- please follow up with your health care team.

*Chelsey is a medical science liaison with Sanofi-Genzyme, and her role in the CBJF is independent of Sanofi-Genzyme, and views/content shared do not reflect Sanofi-Genzyme.

In the season finale of season 1, Chelsey chats with Sumaira Ahmed of The Sumaira Foundation (TSF) for NMO for a recap on Demystifying NMO. Sumaira shares her insights as both an NMO patient, TSF founder and community leader. Chelsey and Sumaira rehash the episodes and provide their take-aways. They review the goals of the podcast, what they learned throughout the season, their favorite moments, optimism for the NMO community and what's to come.

In this episode, host Chelsey talks all things related to NMO pain with Dr. Shamik Bhattacharyya, a neurologist at Brigham and Women's Hospital and assistant professor of neurology at Harvard Medical School. Chelsey learns that pain is very prevalent in NMOSD, and presents itself in many ways. They chat a bit about the science of NMO-related pain, exploring how and why it's different than pain related to multiple sclerosis. Although there is no 'magic bullet' to wipe out NMO-pain, Dr. Bhattacharyya talks through the number of ways to manage chronic pain including lifestyle changes, medications, devices and complementary treatments. Dr. Bhattacharyya also answers questions on opiates (not to be used as backbone of pain management and used sparingly!), medical cannabis, cryotherapy and mindfulness. Lots to learn!

In this episode, Chelsey chats with Marissa Shackleton, Executive Director at the Elliot Lewis Center in Massachusetts. Marissa has 8 years of experience working with patients with NMO and multiple sclerosis and is active with the National MS Society and National Infusion Center Association. She’s a national speaker on access, reimbursement, infusion centers and practice management, and is passionate about patient care and access to affordable treatment. Marissa provides insight on insurance- What’s a deductible? What’s a premium? Any tips to choosing an insurance plan? What’s the difference between Medicaid and Medicare? What are some best practices to managing insurance and making sure treatment is approved? What financial options are available for treatment?

In light of the COVID19 pandemic, Marissa also provides specific information regarding navigating healthcare and patient access in the era of this new virus, including insights on relevant aspects of the new legislation passed by Congress in response to the pandemic, the Families First Coronavirus Response Act.