Demystifying NMO & MOG

In the second part of our series on working with NMO and MOG, we are joined by Dr. Farrah Mateen. This year she published work that focuses on the socioeconomic impact of NMOSD on patients and caregivers. The work of Dr. Mateen and her team provides us with one of the most in-depth looks at the psychosocial toll, risks, unmet needs, and opportunity loss due to NMOSD.

ABOUT US:

The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech.

SOCIAL & WEBSITE:

Farrah Mateen, MD, PhD

Website - https://doctors.massgeneralbrigham.org/provider/Farrah+J+Mateen/255866

Global Neurology Research Group - www.massgeneral.org/neurology/research/global-neurology-research-group

Twitter - https://twitter.com/FarrahMateen

Connect With UsWebsite - https://www.sumairafoundation.org

Facebook - https://www.facebook.com/TheSumairaFoundation

Instagram - https://www.instagram.com/demystifying_nmomog

Twitter - https://twitter.com/DemystifyingNMO

TIMESTAMPS/TOPICS:

00:01:15 Dr. Farrah Mateen

00:03:29 Impact of NMOSD on Employment

00:05:53 What We Can Learn From This Research

00:07:48 Barriers to Employment

00:10:45 Burden of Treatment

00:15:38 Time to Diagnosis

00:21:17 Age of Onset and Future Opportunities

00:24:48 The Role of Mental Health on Returning to Work

00:29:32 Unmet Needs

00:38:36 Disclosing Illness

00:41:11 Comparing NMOSD's Impact

00:44:49 Impact on Caregivers

02:34:00 Future of this Research

LINKS:

Mateen FJ, Trápaga Hacker CM. Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods. Front Neurol. 2023 Mar 9;14:1142640. doi: 10.3389/fneur.2023.1142640. PMID: 36970509; PMCID: PMC10033531. https://www.frontiersin.org/articles/10.3389/fneur.2023.1142640/full

Trapaga Hacker CM, Hjerthen IG, Shirkoohi A, et al. Impact of NMOSD on employment: a global survey. Presented at: 2023 ACTRIMS Forum; February 23-25; San Diego, CA. Abstract P320. https://www.frontiersin.org/articles/10.3389/fneur.2023.1142640/full

CREDITS:

Producer & Host - Brian Dawson

Guest Photo - Mass General Hospital

Music - Denys Kyshchuk from Pixabay

Many people will recognize this episode’s guest as “Nell’s mom.” But today, we are focusing on the journey of Dr. Maggie Kang, whose world was shaken to its core when her daughter was diagnosed with NMOSD. Bogged down by the stress and the uncertainty of the future, she consulted a coach. Maggie soon realized she was the barrier to moving forward. The results were so profound she became a certified life coach focused on supporting the rare disease community, especially moms.Last year she shared her experiences at TEDxCherryCreekWomen, and she is here today to continue that conversation about how those early days impacted her family and, ultimately, what she learned that could help us all work through pain and suffering.ABOUT US:The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Maggie KangWebsite - https://maggiekangmd.comVoices of NMO - www.sumairafoundation.org/maggies_nmo_story_finding_miraclesTEDxCherryCreekWomen - https://youtu.be/Dgr_Ng9Dt6cConnect With UsWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOTIMESTAMPS/TOPICS:00:00:59 Dr. Maggie Kang00:02:16 Nell's Story00:07:35 Changes in Family Dynamics00:10:11 Balancing Mom vs. Doctor00:11:58 Realizing You Need Help00:17:19 Not Everyday Will Be Rosy00:18:35 How Life Coaching Can Help00:20:48 Working Through Pain00:21:55 Writing Your Narrative00:26:04 The Ripple Effect of Finding Joy00:28:57 Responding With Pain and Suffering00:31:10 Mom GuiltLINKS:My Hospital Story by Nell Choi - https://www.amazon.com/My-Hospital-Story-Nell-Choi/dp/1982262842CREDITS:Producer & Host - Brian DawsonGuest Photo - Maggie KangMusic - Denys Kyshchuk from Pixabay

In this episode, we are joined by Anessa Powell to discuss the many challenges that people with chronic illnesses face in the workplace, from disclosing their illnesses to finding opportunities and navigating professional relationships.Following her Addison’s Disease (Primary Adrenal Insufficiency) diagnosis, she focused on raising awareness that disabilities come in many forms. Her outreach efforts led Anessa and her husband, Bill, to create AllAbility Recruiting, where they strive to Leave No Ability Behind through disability employment, training, and consulting.

ABOUT US:

The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech.

SOCIAL & WEBSITE:

Anessa Powell

Website - https://allabilityrecruiting.com

LinkedIn - https://www.linkedin.com/in/anessa-powell/

Demystifying NMO & MOG podcast

Instagram - https://www.instagram.com/demystifying_nmomog

Twitter - https://twitter.com/DemystifyingNMO

The Sumaira Foundation

Website - https://www.sumairafoundation.org

Facebook - https://www.facebook.com/TheSumairaFoundation

TIMESTAMPS/TOPICS:

00:00:49 Anessa Powell

00:10:45 Finding Opportunities

00:13:21 To Disclose or Not To Disclose

00:16:02 ADA, Protection for Employees & Employers

00:21:04 Accommodations

00:23:09 Managing Co-worker Relationships

00:28:54 Return to the Office

00:31:08 Post-COVID Work Etiquette

00:32:37 Breaking down Misconceptions and Barriers

00:38:10 How Organizations Can Access Untapped Potential

00:40:33 Young Adults and Entering the Workforce

CREDITS:

Producer & Host - Brian Dawson

Cover Art - Sumaira Ahmed

Guest Photo - Courtesy of AllAbility Recruiting

In this episode, we are joined by professional service dog trainer Leslie Horton to talk about all things service dogs, including what they are, legal protections, and training. We try to clear up some common misconceptions and touch on how they differ from emotional support animals, behavior standards in public, and being a “Certified” service dog.

She owns Most Fine Canine in Frederick, Maryland, where she has spent over 20 years training and specializing in service dogs. She is certified as a dog trainer and service dog trainer and was inducted into the International Association of Canine Professionals (IACP) Hall of Fame.

Leslie is also an R.N. and the Coordinator of Inova Fairfax Hospital’s Animal Assisted Care (AAC) program overseeing teams of handlers and dogs at the health system's four facilities.

Leslie's experiences as a dog trainer, medical professional, and patient give her incredible insight on a topic where there is a lot of confusion and can be pretty emotional for people.

ABOUT US:

The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech.

STAY CONNECTED:

Leslie Horton, IACP CDT, CDTA, PDTI, CSDT

Website - https://www.mostfinecanine.net

Facebook - https://www.facebook.com/HortonLeslieL

Demystifying NMO podcast

Instagram - https://www.instagram.com/demystifying_nmomog

Twitter - https://twitter.com/DemystifyingNMO

The Sumaira Foundation

Website - https://www.sumairafoundation.org

Facebook - https://www.facebook.com/TheSumairaFoundation

TIMESTAMPS/TOPICS:

00:00:58 Leslie Horton

00:02:14 Service Dogs Vs. Emotional Support Animals

00:02:58 Where Can Service Dogs Go?

00:07:06 What Can A Business Ask?

00:08:32 "Certification"

00:08:51 Standards Of Behavior

00:10:55 Fake Service Dogs

00:18:24 What Is The Process Of Getting A Service Dog?

00:26:57 Training A Service Dog

LINKS:

ADA Requirements: Service Animals https://www.ada.gov/resources/service-animals-2010-requirements/

ADA Service Animal FAQ

https://www.ada.gov/resources/service-animals-faqs/

IACP - Service Dogs Overview https://www.canineprofessionals.com/service-dogs-overview

IACP - Business Resources Regarding Service Dogs https://www.canineprofessionals.com/business-resources-regarding-service-dogs

CREDITS:

Executive Producer -

Host - Brian Dawson

Music - Denys Kyshchuk from Pixabay

In this episode, Brian talks with Dr. Amy Sullivan about resilience and how chronic illness impacts mental health.

In her role as an Associate Professor of Medicine and, the Director of Behavioral Medicine & Research at the Mellen Center for MS, Director of the Neurological Institute Engagement and Wellbeing, Dr. Sullivan works with patients and families dealing with the impact of illness. She has also become a leading voice in physician and caregiver self-care, burnout, and psychological health and spearheaded Mellen Center's efforts that led to the National Psychologically Healthy Workplace Award, Best Practice by the American Psychological Association.

ABOUT US:

The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech.

STAY CONNECTED:

Amy Sullivan, PsyD, ABPP

Website - https://my.clevelandclinic.org/staff/13526-amy-sullivan

Twitter - https://twitter.com/DrAmyBSullivan

Demystifying NMO podcast

Instagram - https://www.instagram.com/demystifying_nmomog

Twitter - https://twitter.com/DemystifyingNMO

The Sumaira Foundation

Website - https://www.sumairafoundation.org

Facebook - https://www.facebook.com/TheSumairaFoundation

TIMESTAMPS/TOPICS:

00:01:25 Dr. Amy Sullivan

00:01:49 What is Resilience?

00:03:52 Where Does Resilience Come From?

00:10:21 Resilience Fatigue

00:12:23 The Grieving Process in Chronic Illness

00:15:00 How to Center Yourself

00:16:33 Wellness

00:18:47 Motivation

00:19:56 Asking for Help

00:20:27 Caring for Caregivers & Breaking Down Stigmas

CREDITS:

Host - Brian Dawson

Music - Denys Kyshchuk from Pixabay

Guest Photo - Cleveland Clinic

In today’s episode, we welcome an award-winning physician, researcher, and educator, Dr. Aaron Boster. He is a board-certified Neurologist and the founder and President of the Boster Center for Multiple Sclerosis in Columbus, Ohio.

We had the pleasure of catching up with Dr. Boster to talk about harnessing the power of social media to provide 24-7 access to information reliable, understandable medical information. He also breaks down the importance of clinical trials and walks us through each phase of a study and what a participant can expect.

ABOUT US:

The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech.

STAY CONNECTED:

Aaron Boster, M.D.

Website - https://bosterms.com

Youtube - https://www.youtube.com/c/AaronBosterMD

Twitter - https://twitter.com/AaronBosterMD

Demystifying NMO podcast

Instagram - https://www.instagram.com/demystifying_nmomog

Twitter - https://twitter.com/DemystifyingNMO

The Sumaira Foundation

Website - https://www.sumairafoundation.org

Facebook - https://www.facebook.com/TheSumairaFoundation

The Connor B Judge Foundation

Website - https://www.connorbjudgefoundation.org

Facebook - https://www.facebook.com/cbjvnmo

TIMESTAMPS/TOPICS:

00:00:21 Dr. Aaron Boster

00:01:54 Social Media for Patient Education

00:03:39 Being an Active Participant in Your Care

00:04:05 Shared Clinical Decision Making

00:05:21 Better Communication

00:07:21 Permission To Be Selfish

00:10:48 YouTube

00:11:29 Clinical Trials

00:12:25 The Importance of Being Part of Clinical Trials

00:13:34 The Phases of a Clinical Trial

00:21:00 Finding Clinical Trials

00:26:39 A Paradigm Shift

00:29:48Killing Old Myths

LINKS:

Dr. Noster’s Multiple Sclerosis Clinical Research YouTube Playlist

https://youtube.com/playlist?list=PL3a4GpjWLtCiSkGgtl4UlnFFnk1Fhevkt

CREDITS:

Host - Chelsey Judge

Editor - Brian Dawson

Music - Denys Kyshchuk from Pixabay

Guest Photo - Boster Center for Multiple Sclerosis

Brian spent more than twenty years working in emergency management as a paramedic & law enforcement officer before getting a Master’s degree in Library & Information Science. While serving as the Acting Deputy Secretary of Education for Libraries with the Pennsylvania Department of Education, a cold triggered an autoimmune response leaving him blind & paralyzed from the chest down.

Following an NMO diagnosis, he needed to understand more about the disease. As an information professional, he was shocked that much of the information he got from his care team or found online was outdated, not supported by science, or just plain wrong.

After eighteen months of relapses & research, a consultation with an NMO specialist led to a diagnosis of MOGAD & the proper treatment that gave him his life back.

Brian & Chelsey talk about how critical it is to find reliable, scientifically based information to make the best decisions about your health.

ABOUT US:

Demystifying NMO & MOG is a Sumaira Foundation (TSF) project & made possible with the generous support of Genentech.

STAY CONNECTED:

Brian Dawson

Twitter twitter.com/bkdawson1313

Website www.sumairafoundation.org/brians-mog-story-life-goes-on

LinkedIn www.linkedin.com/in/briankdawson

Demystifying NMO podcast

Instagram www.instagram.com/demystifying_nmomog

Twitter twitter.com/DemystifyingNMO

The Sumaira Foundation

Website www.sumairafoundation.org

TIMESTAMPS:

00:01:17 Health Literacy?

00:04:02 Why is it so Important?

00:08:58 Impact on Health Outcomes

00:15:16 Important Questions to Ask

00:17:20 Provider Responsibility

00:20:36 Good vs. Bad Information

00:23:36 Science Evolves

00:26:08 Finding Good Information

LINKS:

Find your Local Library www.careeronestop.org/LocalHelp/CommunityServices/find-libraries.aspx

TSF NMO Resources www.sumairafoundation.org/nmosd-resources

TSF MOGAD Resources www.sumairafoundation.org/mogad-resources

National Library of Medicine www.nlm.nih.gov/portals/public.html

PubMed Database https://pubmed.ncbi.nlm.nih.gov/

Medline Plus https://medlineplus.gov

CREDITS:

Host -Chelsey Judge

Producer - Brian Dawson

Music - Denys Kyshchuk from Pixabay

Season three starts with big news about the podcast. We talk with Sumaira Ahmed of The Sumaira Foundation about the podcast's growth and inclusivity and introduce a new co-host, Brian Dawson.

Then we were joined by one of the leading NMO and MOG researchers, Michael Levy, MD, Ph.D. Dr. Levy is the Research Director of the Division of Neuroimmunology & Neuroinfectious Disease at Massachusetts General Hospital and is an Associate Professor at Harvard Medical School.

ABOUT US:

The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech.

STAY CONNECTED:

Michael Levy, MD, Ph.D

Twitter - https://twitter.com/mlevy18

Website - https://doctors.massgeneralbrigham.org/provider/Michael+Levy/1090088

Demystifying NMO and MOG Podcast

Instagram - https://www.instagram.com/demystifying_nmomog

Twitter - https://twitter.com/DemystifyingNMO

Website - https://www.sumairafoundation.org/awareness/demystifying-nmo/

The Sumaira Foundation

Website - https://www.sumairafoundation.org

Facebook - https://www.facebook.com/TheSumairaFoundation

TIMESTAMPS:

00:00:00 Launching Season 3 with Big News

00:01:00 The Merger

00:01:48 NMO & MOG, All In It Together

00:04:08 New Co-Host

00:05:26 A Preview of Season 3

00:07:00 Michael Levy, MD, Ph.D.

00:08:05 From MS to NMO, to MOG.

00:09:54 NMO & MOG Overlaps

00:11:47 Different Mechanisms, Similiar Outcomes

00:13:05 Diagnostic Differences

00:14:28 MOG ~vs~ MS

00:17:22 Longterm Outcomes

00:19:30 Being Misdiagnosed

00:21:22 Treatment Overlaps

00:24:44The Future of MOG & Clinical Trials

LINKS:

NMOSD Resources - https://www.sumairafoundation.org/nmosd-resources/

MOGAD Resources - https://www.sumairafoundation.org/mogad-resources/

CREDITS:

Host - Chelsey Judge

Producer & Co-Host - Brian Dawson

Music - Music by Denys Kyshchuk from Pixabay

Guest Photo - The Sumaira Foundation

In the season finale of season 2, Chelsey reviews the topics covered and seeks feedback from listeners for season 3!

To top off season 2, Demystifying NMO features Nell Choi, who shares her powerful and inspiring NMO story and optimistic perspective. Nell is a 13 year old accomplished NMOSD patient advocate. She is a published author of 'My Hospital Story', aiming to foster connection with others going through similar traumatic health journeys. She has also brought national awareness of NMO by appearing on CBS evening news to share her story. Recently, she met with President Joe Biden and First Lady Jill Biden, presenting them with a copy of her book.

In a candid chat with Chelsey, Nell shares:

• At 9 years old, Nell faced the mysterious and confusing onset of NMO, hospitals and the overall healthcare system. Of note, pediatric cases makes up about 3-5% of NMOSD.

• Nell coped through journaling and finding gratitude for her parents and the gifts she would find through her journey, including finding connection in the NMO community, as well as herself and core values through the adversity.

• Her authorship of 'My Hospital Story' taught her the importance of connection with others, and that we all have the power to make an impact.

• Nell's hopes for the future of the NMO community include finding a cure and making sure all impacted by NMO are able to share their story to become more connected.

To learn more about pediatric NMO, here is a scientific journal mentioned in this episode: https://www.frontiersin.org/articles/10.3389/fped.2020.00339/full

Part 2 of our conversation on the NMOSD diagnosis, we discuss the personal 'what now?' element...On the individual level, what does coping and living with a newly obtained NMOSD diagnosis look like? What can you do about it? To answer these questions, Demystifying NMO is delighted to have guest Taylor Ann Macey on the pod to discuss her personal patient experience with her NMOSD diagnosis.

Taylor is a wife, mother, Brigham Young University graduate and life coach, with an educational background in fitness and nutrition, Taylor is candid about her NMOSD diagnosis story:

• What her journey to the NMOSD diagnosis looked like

• How she coped with her new life post NMOSD diagnosis

• Controlling what you can by implementing an integrative approach to NMOSD:

  • Building a trusted clinical care team that incorporates acute relapse management with preventative treatment based on shared decisions

  • Movement! Being mindful and respectful of your body's capabilities and limits, while moving/exercising as you can to show your body love and improve outcome

  • Good, well-balanced nutrition

  • Focusing on your mental and emotional health! Going inward to process difficult life events like an NMOSD diagnosis is critical, and finding a trusted therapist can be impactful and helpful.

• Approaches to identifying all the misinformation on the internet!