Demystifying NMO & MOG The Sumaira Foundation

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

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

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