The MSing Link

In this episode, I’m excited to chat with Jeremiah Robison, the CEO and founder of the Cionic Neural Sleeve! We dive into how this amazing technology can help improve mobility and strength for those of us living with multiple sclerosis (MS). Jeremiah shares his insights on the benefits of the neural sleeve and offers some practical tips for enhancing your walking ability and managing MS symptoms. Join us for a friendly conversation filled with expert advice, exercises, and tools designed to empower your journey with MS and boost your quality of life!

Jeremiah Robison is the Founder and CEO of CIONIC, a neurotech company that builds bionic clothing to help people with mobility differences live more freely and independently. 

CIONIC developed the monumental, FDA-cleared Cionic Neural Sleeve, the first product to combine sensing, analysis, and augmentation into a wearable garment. Prior to CIONIC, Jeremiah spent twenty years at the intersection of data, algorithms, and the human body, driving innovation in sensing and machine learning at Apple, Openwave Systems, Slide, and Jawbone.

Resources mentioned in this episode:

Additional Resources: https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

In this episode of The MSing Link podcast, I’m excited to share some practical tips on how to get stronger with multiple sclerosis (MS). We’ll explore simple exercises and strategies to boost your strength and improve your mobility. Whether you’re new to MS or looking for ways to enhance your daily life, you’ll find helpful advice on managing MS and getting the most out of physical therapy.

Grab your copy of The MSing Link book: https://www.drgretchenhawley.com/the-msing-link-book 

References from today's episode:

The MSing Link Podcast Episode 99 - Aerobic Exercise and Neuroplasticity Spotify || Apple Podcast

Additional Resources: https://www.doctorgretchenhawley.com/insider 

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

I have two guests with me on this episode, which is really exciting because one guest is going to share the science behind a specific type of therapy, and the other guest is someone who has been using this therapy, and she is going to share all of the benefits that she's noticed from it! On today's episode, John educates us on UVB light therapy for multiple sclerosis and Kathy shares her experience using it.

Kathy's bio: Kathy Reagan Young is a prominent patient advocate and the founder of  FUMSnow.com. She has become a leading voice in the patient advocacy space, driven by her personal experience with Multiple Sclerosis.
Kathy's journey as a patient advocate began when she was diagnosed with Multiple Sclerosis in 2008. She quickly realized the impact that chronic illness can have on a person's life and became determined to make a difference. In 2010, she founded FUMSnow.com, a website dedicated to providing resources and support for people with Multiple Sclerosis. In 2015, she launched The FUMS Podcast Show - a companion to her website where she interviews MS experts and inspirational MS patients to bring information, inspiration, and motivation for living your best life with MS.

John's bio:  I have been fortunate to have spent my career on early-stage medical device start-ups. I am a graduate of Stanford University with a master’s in electrical engineering and a bachelor’s in physics from UC-Santa Cruz. At Stanford, I was fortunate to be in the penultimate class of the BioDesign program that brings together clinicians and engineers to identify clinical needs and innovate to improve patient lives and ease the burden on clinicians.

Resources mentioned in this episode:

Webinar of the “Silent Symptoms” Trial — Including Our Journey from COVID to MS - https://www.cytokind.net/release/ms-uvbtrial/

Silent Symptoms Trial Design - https://www.cytokind.net/trials/athomephototherapytrials/

Website:   www.cytokind.net & https://daavlin.com/

Kathy’s weekly newsletter: www.FUMSnow.com/6pack 
Kathy’s website: https://fumsnow.com/

Additional Resources: https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

 Today, we're going to be talking about a specific drug that has been shown in research thus far to help with remyelination. Do you remember back in the day, there was research in the MS world that was looking at the possible effects of clemastine on multiple sclerosis. The hope here was that it would help with remyelination, AKA building myelin. That same research has been integral in helping researchers develop an even more effective drug that is currently in phase two trials, and it's showing really promising results for remyelination in humans! And it's about time you know about it!

Resources mentioned in this episode:

Additional Resources: https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

Thank you so much for tuning in today! I have the Executive Vice President of Advocacy and Healthcare Access with me today. Her name is Bari Talenti. On today's episode, we talk about changes to healthcare policies for MS and what to keep an eye out for that could increase access and equity to healthcare. 

As the Executive Vice President of Advocacy and Healthcare Access, Bari leads teams who leverage public policies to find solutions for people with MS, engage healthcare providers and others in the healthcare space and work towards people affected by MS having access to the high quality healthcare they need.  Bari also leads the Society’s work to increase affordability and access to MS medications.

In 2018, Bari was elected as president of the MS Coalition and explores opportunities to leverage the collaborative efforts of the nine Coalition organizations to improve the lives of people affected by MS.

Bari received a law degree from the University at Buffalo School of Law and is a member of the New York and District of Columbia bars. She has been with the National MS Society since 2004.

Resources mentioned in this episode:

MS Activist Network: https://www.nationalmssociety.org/how-you-can-help/get-involved/advocate/become-an-ms-activist/join-ms-activist-network

MS activist X account: https://x.com/MSactivist

MS Navigator: https://www.nationalmssociety.org/resources/get-support/ms-navigator 

Additional Resources: https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

I am very excited to talk about this topic because spasticity is one of those symptoms that is just, I think, the most frustrating and discouraging. One example is if you've noticed weakness from baclofen or weakness from botox when attempting to manage MS spasticity, this episode will explain why and give you MS exercises to help! There's lots of things that we can do to manage spasticity. So, let's dive in!

Resources from this episode:

The MSing Link Podcast - Episode 81 - Spotify / Apple

The MSing Link Podcast - Episode 118 - Spotify / Apple

The MSing Link Podcast - Episode 157 - Spotify / Apple

The MSing Link Program

Behind The Scenes Video Inside The MSing Link

Additional Resources:

https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

I have a very special guest with me, Dr. Rani Banik. You may recognize her name. We actually had her on the podcast previously where she talked all about MS and other demyelinating diseases and how they affect our eyes. But today we're gonna be talking about something different. We're actually going to be diving into how to manage autoimmune diseases through diet and lifestyle to make a positive impact on vision and brain health.

Dr. Rani Banik is America's Integrative Eye Doctor. She is a board-certified ophthalmologist and fellowship-trained neuro-ophthalmologist with additional training in Integrative and Functional Medicine. 

Dr. Rani focuses on the root cause of eye diseases, and uses integrative strategies for conditions such as dry eye, thyroid eye disease, macular degeneration, cataract, glaucoma, and other autoimmune diseases of the visual system. She also has a special interest in migraine with visual symptoms, multiple sclerosis, and eye stroke. Her treatments are based on nutrition, botanicals, lifestyle modification, essential oils, and supplements. 

Dr. Rani runs a private practice based in New York City and is also Associate Professor of Mount Sinai in NYC where she serves as an educator and researcher. As Principal Investigator of several clinical trials in diseases of the optic nerve, Dr. Rani uses cutting-edge approaches such as nanotechnology and gene therapy.

Dr. Rani’s book Beyond Carrots: Best Foods For Eye Health A to Z:  https://www.amazon.com/Beyond-Carrots-Best-Foods-Health/dp/B0C2SCNWSH

Dr. Rani’s supplement line, Ageless: https://shop.rudranibanikmd.com/

Dr. Rani’s FB group for The Macular Degeneration Diet and Lifestyle: https://www.facebook.com/groups/4709862885694718/

Dr. Rani’s FB group for Envision Health: https://www.facebook.com/groups/1864863853844167/

Dr. Rani’s FB group for Eye on Migraine: https://www.facebook.com/groups/365563447148126/

Additional Resources: https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

As I am recording this, it is very hot outside. I feel like this is the second heat wave that we've had this summer, and it's got me thinking. So often, neurologists and other healthcare providers talk a lot about heat sensitivity and Uhthoff's phenomenon, is heat intolerance, but other thermoregulation dysfunctions are not talked about as often. And that's what we're going to talk about today! 

Referenced in podcast:
The MSing Link Podcast Episode #5, A Solution for Heat and Cold Sensitivity https://open.spotify.com/episode/43Grg7gvKwJ4SSjq8SzWMf?si=6cf17a3e032d48d9

Additional Resources: https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

Today, I'm going to be talking about adaptive equipment that you can use in your daily life that can help you with your MS. And what that might mean is that it's a tool or a product that can help improve your walking or it can help improve your energy or just the way your muscles work, reducing the spasticity.

Elevate 360 / Dictis band

Foot Up Brace

Kizik Shoes - code: DOCTORGRETCHEN10

Leg Lifter

Car Cane

Grab Bars

Raised Toilet Seat

Shower Chair

Reachers or "Grabbers"

Adaptive Utensils / Foam Tube Grips

Additional Resources: https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

Today, I am interviewing Amy Thompson. Amy was diagnosed with MS in 2018 and felt there was little representation and a lack of support specifically for young adults living with MS. On today's episode, we talk about her diagnosis, how MS Together came about, and what MS Together offers.

Amy is a charity founder and CEO, winner of a National Diversity Award, a freelance content creator and a disability advocate. Amy was diagnosed with Multiple Sclerosis in 2018 and felt there was little representation and a lack of support specifically for young adults living with MS, so in 2019, she founded MS Together, which started as a community organization but is now a UK-based charity. She featured in a number of charity campaigns and did media interviews to help raise awareness of MS.

Connect with Amy: 

Website & Instagram

Additional Resources: https://www.doctorgretchenhawley.com/insider

Reach out to Me: [email protected] 

Website: www.MSingLink.com

Social: 

★ Facebook: https://www.facebook.com/groups/mswellness

★ Instagram: https://www.instagram.com/doctor.gretchen

★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1

→ Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse

→ Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram

→ The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink