In this episode, we discuss emergency preparedness and inclusivity with our guest, Brian Kosczuk, a second-generation paramedic and Pennsylvania EMS Educator of the Year.

Brian shares how living with a rare disease, myositis, and being a cardiac arrest survivor have allowed him to see different perspectives and how that shapes his role as a first responder, educator, and advocate.

Brian also discusses the challenges and solutions for ensuring emergency alerts and responses are accessible to people with disabilities. From adaptive technologies to the role of local emergency managers in accommodating specific needs, he provides valuable insights into making emergency services more inclusive.

Tune in as he gets us thinking about how to prepare for the worst.

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:

Brian Kosczuk

LinkedIn - https://tinyurl.com/2he45j6n

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/

ADDITIONAL LINKS

Preparing for Disaster for People with Disabilities and Other Special Needs

(FEMA and the American Red Cross)

https://tinyurl.com/ycjpxga2

People with Disabilities (U.S. Dept. of Homeland Security) https://www.ready.gov/disability

Disability and Health Emergency Preparedness (CDC)

https://tinyurl.com/yg73h3uu

SUPPORT THE PODCAST

Donate to Illuminate

https://www.sumairafoundation.org/advocacy/donate/

CREDITS:

Producer & Host - Brian Dawson

Music - Denys Kyshchuk from Pixabay

In this episode, we talk about how physical therapy can help people with demyelinating diseases, disabilities, and chronic illnesses.

Some of you may recognize her from social media as Dr. Gretchen, who shares excellent videos about PT and exercise as part of her MSing Link wellness program.

Gretchen Hawley is a Doctor of Physical Therapy and a Multiple Sclerosis Certified Specialist. She has been a keynote speaker at several MS conferences and a popular guest lecturer at educational events and MS support groups.

She shares her thoughts on how a holistic approach to physical therapy that emphasizes the importance of adaptive strategies tailored to each individual's needs can make a difference by improving mobility, independence, and overall quality of life.

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. Gretchen Hawley

Website - www.drgretchenhawley.com

Facebook - www.facebook.com/DrGretchenPT

Instagram - www.instagram.com/doctor.gretchen

Twitter - x.com/DrGretchenPT

Youtube - www.youtube.com/c/DoctorGretchenHawley

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:

00:01:02 Dr. Gretchen

00:08:39 Neurplasticity

00:16:07 Rehab vs. Maintenance

00:20:05 Getting Started

00:23:27 PT for Better Quality of Life

00:25:59 Functional Exercise

00:29:33 Modifications Can Lead to Success

00:33:13 Heat Intolerance

00:35:28 Rest is Crucial

00:42:30Finding a PT

ADDITIONAL LINKS:

The MSing Link book - www.drgretchenhawley.com/the-msing-link-book

SUPPORT THE PODCAST

Donate to Illuminate

https://www.sumairafoundation.org/advocacy/donate/

CREDITS:

Producer & Host - Brian Dawson

Music - Denys Kyshchuk from Pixabay

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