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In this emotional episode, we delve into the profound relationship between pets and mental health.
Starting with the TSF AMbassador for New Mexico, Marie Abrego talks about the recent loss of her dachshund Bambi while traveling to raise awareness about NMO.
Then, we are joined by TSF Ambassador for Illinois, AnneMarie Nawrocki, a licensed social worker and TSFs ambassador for Illinois; they explore the multifaceted benefits of pet ownership for individuals with disabilities and chronic illnesses. From reducing stress and providing emotional support to promoting opportunities to enhance physical health and promoting social connection, pets play a crucial role in improving overall well-being. The discussion also touches on coping with the loss of a beloved pet, highlighting the unique grieving process and the importance of support from friends and family. Through personal anecdotes and expert insights, this episode celebrates the transformative power of the human-animal bond in navigating life's challenges.
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:
Marie Abrego
Website - t.ly/ndARI
Twitter - https://twitter.com/nmo_marie
AnneMarie Nawrocki
Website - t.ly/RN2TD
LinkedIn - www.linkedin.com/in/annemarie-nawrocki-5426b7120/
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
TIMESTAMP:
00:01:03 Marie Abrego
00:04:06 Marie & Bambi
00:20:42 AnneMarie Nawrocki
00:23:37 Pets & Wellbeing
00:27:13 Physical benefits
00:35:57 Loss of a Pet
00:39:29 Coping with the Inevitable
00:42:03 Supporting a Grieving Pet Owner
SUPPORT THE PODCAST:
Donate to Illuminate
https://www.sumairafoundation.org/advocacy/donate/
CREDITS:
Producer & Host - Brian Dawson
Music - Denys Kyshchuk from Pixabay
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Episode #31 | EUPATI Education in Action: Leda's Path to Patient Advocacy
In this episode, we delve into the world of patient advocacy with Leda Bresnov. Leda shares her transformative journey following her NMO diagnosis and the pivotal role patient advocacy and education played in reshaping her life. From her initial involvement as the Denmark Ambassador with the Sumaira Foundation to her experiences in EUPATI’s Patient Academy, Leda's dedication to raising awareness and empowering fellow patients is making a significant impact in healthcare. Join us as Leda offers her insights into the power of patient involvement in healthcare decision-making, highlighting the importance of education and advocacy in shaping the future of healthcare.
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:
Leda Bresnov
Website - https://www.sumairafoundation.org/ledas-nmo-story-i-want-to-live-while-i-live/
Instagram - https://www.instagram.com/bresnov/
Twitter -https://twitter.com/Bresnov
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:
00:01:14 Leda Bresnov
00:04:36 EUPATI Patient Expert Training Programme
00:07:21 Patient Expert Training Programme
00:11:02 Patient Input and Drug Development
00:23:39 Self-Advocacy & Involvement in Healthcare Decision-Making
LINKS:
EUPATI - https://eupati.eu/
European NMOSD Toolkit - https://www.nmosd-in-focus.com/-/media/Themes/Horizon/nmosd-in-focus-com/nmosd-in-focus-com/Documents/European-NMOSD-Patient-Toolkit.pdf
SUPPORT the Podcast
Donate to Illuminate
https://www.sumairafoundation.org/advocacy/donate/
CREDITS:
Producer & Host - Brian Dawson
Music - Denys Kyshchuk from Pixabay
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In recent years, we have seen healthcare systems collapse under the strain of natural disasters and armed conflict and hundreds of millions of people being forcibly displaced. So, how do we meet the healthcare needs of people in humanitarian disasters, let alone those living through these nightmares with a rare disease such as NMO?
To talk about the unique challenges of diagnosing and treating rare conditions like NMO in these low-resource settings, we are joined by Dr. Farrah Mateen.
She highlights common barriers such as lack of disease awareness, limited diagnostic testing availability, and restricted treatment access. Dr. Mateen also proposes concrete goals to better support patients facing the most challenging circumstances.
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
The Sumaira Foundation
Website - www.sumairafoundation.org
Facebook - www.facebook.com/TheSumairaFoundation
LINKS:
Mateen FJ. Neurological disorders in complex humanitarian emergencies and natural disasters. Ann Neurol. 2010 Sep;68(3):282-94. doi: 10.1002/ana.22135. PMID: 20818788.
Mateen FJ. Neurocritical care in developing countries. Neurocrit Care. 2011 Dec;15(3):593-8. doi: 10.1007/s12028-011-9623-7. PMID: 21863357.
Mateen FJ, Hanafi I, Birbeck GL, Saadi A, Schmutzhard E, Wilmshurst JM, Silsbee H, Jones LK Jr; AAN Quality Committee. Neurologic Care of Forcibly Displaced Persons: Emerging Issues in Neurology. Neurology. 2023 May 16;100(20):962-969. doi: 10.1212/WNL.0000000000206857. Epub 2023 Mar 1. PMID: 36859408; PMCID: PMC10186241.
Mateen FJ. Rectifying global inequities in neuromyelitis optica diagnosis and treatment. Mult Scler. 2023 Jul;29(8):932-935. doi: 10.1177/13524585231179108. Epub 2023 Jun 10. PMID: 37300419.
SUPPORT the Podcast
Donate to Illuminate
https://www.sumairafoundation.org/advocacy/donate/
CREDITS:
Producer & Host - Brian Dawson
Music - Denys Kyshchuk from Pixabay
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We kick off Season 4 of the Demystifying NMO & MOG Podcast with a very special guest, Candice Galvan.
Candice became an Ambassador for The Sumaira Foundation after her daughter was diagnosed with NMO. She joins us today to talk about her path to becoming an advocate and how she is helping care for others through her work as program manager for TSF’s Human Collective Project.
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:
Candice’s Story
https://www.sumairafoundation.org/bellas-nmo-story-in-this-family-we-fight-together/
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:
00:01:34 Candice's Story
00:11:28 Becoming an Advocate
00:14:42 Explaining NMO to a 9-year-old
00:17:57 Medical Marijuana
00:22:10 TSF's Human Collective Project
LINKS:
Human Collective Project (HCP) Support Group Meetings
https://www.sumairafoundation.org/community/human-collective-project-2/
SUPPORT the Podcast
Donate to Illuminate
https://www.sumairafoundation.org/advocacy/donate/
CREDITS:
Producer & Host - Brian Dawson
Music - Denys Kyshchuk from Pixabay
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As we wrap up Season Three of the podcast, we are speaking with Amy Niles of the PAN Foundation. Amy is the Chief Advocacy and Engagement Officer, where she dedicates her time to building relationships, public policy, and advocacy initiatives. She joins us to discuss how PAN helps people manage the financial burden of chronic illnesses. Amy also explains important updates to Medicare and some new insurance practices that can be harmful to patients with life-threatening, chronic, and rare diseases.
ABOUT US:
The Demystifying NMO and MOG podcast is a Sumaira Foundation project and
was made possible with the generous support of Genentech.
SOCIAL & WEBSITE:
Amy Niles & The PAN Foundation
Website - https://www.panfoundation.org
Facebook - https://www.facebook.com/PANFoundation
Instagram - https://www.instagram.com/pan.foundation
Twitter - https://twitter.com/pan_foundation
Connect With Us
Website - https://www.sumairafoundation.org
Facebook - https://www.facebook.com/TheSumairaFoundation
Instagram - https://www.instagram.com/demystifying_nmomog
Twitter - https://twitter.com/DemystifyingNMO
TIMESTAMPS
00:02:02 Amy Niles & The Pan Foundation
00:04:16 A Day in the Life
00:05:54 Serving the NMO Comunity
00:06:29 Eligibility Criteria
00:09:03 The Application Process
00:11:30 The Fund Finder
00:14:58 Medicare Updates
00:20:37 Copay Accumulators
00:24:49 Alternative Funding Programs
00:30:54 Do You Have a Copay Accumaltor?
00:32:32 Legislation to Protect Patients & What You Can Do
LINKS:
Fund Finder - https://www.panfoundation.org/find-disease-fund
Find help with FundFinder - https://www.panfoundation.org/fundfinder
Neuromyelitis Optica Spectrum Disorder - PAN Foundation - https://www.panfoundation.org/disease-funds/neuromyelitis-optica-spectrum-disorder
Everything you need to know about Medicare reforms - PAN Foundation - https://www.panfoundation.org/everything-you-need-to-know-about-medicare-reforms
Ask your elected officials to support The HELP Copays Act and ban copay accumulator programs - https://www.panfoundation.org/end-copay-accumulators
CREDITS:
Producer & Host - Brian Dawson
Guest Photo - The PAN Foundation
Music - Denys Kyshchuk from Pixabay
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Episode 27 | Double Seronegative NMO
In this episode, we look at Double Seronegative NMO. We are joined by Nicole Helton to give us the patient perspective. Then Dr. Sara Mariotto, to learn more about testing and the future of the disease. Finally, Sumaira Ahmed talks about her personal experiences as a Double Seronegative NMO patient and the importance of advocacy in research and ensuring patients have access to appropriate care.
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:
Dr. Sara Mariotto
Twitter - https://twitter.com/SaraMariottoMD
Sumaira Ahmed
Linkedin - https://www.linkedin.com/in/sumairaahmed/
Twitter - https://twitter.com/SumairaFlower
Connect With Us
Website - https://www.sumairafoundation.org
Facebook - https://www.facebook.com/TheSumairaFoundation
Instagram - https://www.instagram.com/demystifying_nmomog
Twitter - https://twitter.com/DemystifyingNMO
TIMESTAMPS/TOPICS:
00:01:30 Nicole Helton, Patient Experience
00:06:30 Self-doubt
00:08:14 Accessing Treatment
00:15:03 Dr. Sara Mariotto
00:15:22 Defining Double Seronegative NMO
00:21:42 Treatment
00:25:05 Diagnostic Guidelines
00:32:51 Research
00:37:27 Finding a Doctor and Resources
00:39:48 Sumaira Ahmed
00:42:04 Barriers to Care
00:43:10 Building Resources
00:47:03 Advocating for Double Seronegative NMO
00:50:39 Closing with Nicole Helton
LINKS:
Double seronegative NMOSD with Dr. EoinFlanagan -
https://youtu.be/pdYMQImBHp0
Double Seronegative NMOSD Facebook Group -
https://www.facebook.com/groups/6274134689359958
CREDITS:
Producer & Host - Brian Dawson
Music - Denys Kyshchuk from Pixabay
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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!
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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.'
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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:
NMOSD- and MOG-associated disorders: overlaps and distinctions
Unraveling complexities of NMOSD
Data updates on currently FDA-approved NMOSD treatments
Neurodegeneration and demyelination in the CNS: Potential treatment targets in neuroregenerative processes
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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
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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?
- Visa fler
