Demystifying NMO & MOG The Sumaira Foundation

In this episode, we are featuring Alanna Yee.
The onset of autoimmune encephalitis and the frustrations leading to her diagnosis would change her life in ways she never could have imagined. These experiences inspired Alanna to begin sharing her own story to help others navigate similar challenges.
Alanna generously shares her insights on how to effectively tell personal health stories. She guides us on where to begin, how to strike a balance, and how to respect our own privacy when sharing such personal narratives. Her perspective on the therapeutic value of sharing patient experiences and its potential to drive progress for rare diseases is truly enlightening.

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:
Alanna Yee
Facebook - https://www.facebook.com/wherearemypillows
Instagram - www.instagram.com/wherearemypillows
Twitter - twitter.com/wampillows

Demystifying NMO podcast
Instagram - www.instagram.com/demystifying_nmomog
Twitter - twitter.com/DemystifyingNMO

The Sumaira Foundation
Website - www.sumairafoundation.org
Facebook - www.facebook.com/TheSumairaFoundation
Voices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/

TIMESTAMPS/TOPICS:
00:01:27 Alanna Yee
00:08:08 How To Start Sharing Our Experiences
00:11:45 More Than Words, Other Ways To Tell Our Stories
00:16:11 Facts & Emotions
00:23:53 Authenticity And Privacy
00:29:41 Advice For People Considering Sharing Their Health Stories

ADDITIONAL LINKS
The profoundly personal side of rare disease: Humanizing the therapeutic journey of patients from Science Magazine, a peer-reviewed academic journal by the American Association for the Advancement of Science. t.ly/Llg1U

SUPPORT THE PODCAST
Donate to Illuminate
https://www.sumairafoundation.org/advocacy/donate/

CREDITS:
Producer & Host - Brian Dawson
Music - Denys Kyshchuk from Pixabay

This week's episode offers a compelling narrative for both patients and clinicians as we delve into Roselyne's extraordinary journey. Diagnosed with Neuromyelitis Optica (NMO) as a young adult, she would later decide to pursue a career as a physician.
Throughout her journey, Roselyne grappled with the psychological impact of straddling the roles of both clinician and patient, navigating feelings of guilt and obligation along the way.
Roselyne emphasizes the importance of patient-provider communication and empathy in healthcare. She highlights the need for clinicians to convey diagnoses in a clear and compassionate manner, drawing from her own experiences of receiving life-altering news with nonchalance.
Tune in as Roselyne shares her hard-won wisdom on navigating the complex intersection of healthcare and chronic illness.

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:
Roselyne
Instagram - https://www.instagram.com/roselyne_trains
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:
00:01:00 Roselyne
00:01:28 The Path to Being a Physician
00:04:29 Educating Others
00:06:14 Guilt and Obligation
00:10:03 Self-care in a Demanding Profession
00:14:48 Managing a Career with NMO
00:17:23 Improving Clinician - Patient Relationships
00:25:33 Learning to Accept Illness

SUPPORT THE PODCAST
Donate to Illuminate
https://www.sumairafoundation.org/advocacy/donate/

CREDITS:
Producer & Host - Brian Dawson
Music - Denys Kyshchuk from Pixabay

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

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

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

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