RealTalk MS

This past year, a bill was introduced in the California State Assembly that would create more transparency among pharmaceutical companies and make more lower-cost generic drugs available to Californians by making it easier for the California Attorney General to prosecute pharmaceutical companies for so-called "pay for delay" deals.   MS Activists in California talked to our state legislators, aski...

Multiple studies show that early and ongoing treatment with disease-modifying therapy is the most effective way to slow MS progression, modify the course of the disease, and maintain optimal brain health. Yet, for many people living with MS, these life-changing treatments remain out of reach. The National MS Society has released the results of a new survey that demonstrates that this problem may b...

Last week, the National MS Society convened the Pathways to Cures Think Tank. I think that we'll look back at this meeting as a historic moment when a flag was planted and intentions were declared. We've taken the first steps toward creating a global consensus for defining specific pathways to stop MS progression, restore lost function, and end MS.     The Pathways to Cures Think Tank was an extra...

We're exploring the healing power of adventure. My guest is Brad Ludden, the founder of First Descents, a non-profit organization that, since 2001, has taken over 10,000 young adult oncology patients on more than 1,000 outdoor adventures that feature activities like rock-climbing, kayaking, and surfing. Last year, First Descents expanded their programming to include outdoor adventures designed for...

Access to MS symptom self-management care is extremely limited. That's why my guest, Dr. Anna Kratz, and her colleagues created My MS Toolkit --  a web-based, self-guided symptom self-care program designed especially for people with MS. (And it's FREE!)    We're talking with Dr. Kratz about how My MS Toolkit was developed and what makes it such a powerful online tool for people living with MS. We'...

MS Warriors are those special individuals whose efforts on behalf of people affected by MS go above and beyond the norm to raise awareness, raise funds, and raise our spirits  My guest this week is Marc Boyer. Marc biked more than 4,000 miles, from one end of Canada to the other, raising over $160,000 for the MS Society of Canada. Marc not only raised money that will fund important MS research, hi...

In this episode of RealTalk MS, we're re-visiting my conversation from ECTRIMS 2019 with Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society. This is one of my favorite conversations of the entire year, and you've made it this year's most downloaded and listened to RealTalk MS episode.   We're also talking about a new report issued by RAND Europe, entitled Exploring...

Is MS preventable? Is progressive MS modifiable? We'll tackle these questions and more with my guest, Professor Gavin Giovannoni. Professor Giovannoni is not only a leading academic neurologist based at Barts and The London School of Medicine and Dentistry, Queen Mary University London, he's also a prolific blogger, tweeter, speaker, author, and opinion leader. It's a conversation you don't want t...

This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS. My guest is Cathy Chester, who is a paid spokesperson for the MS MindShift. Cathy has lived with relapsing-remitting multiple sclerosis since 1986 and knows that although she has MS, MS does not have her. Today, Cathy hopes to empower, educate and inspire othe...

What can you do when the MS medication you need can cost $80,000, $90,000 or even $100,000 a year, and you don't have health insurance? Or you have health insurance, but your insurance company won't approve the specific disease-modifying therapy that your neurologist thinks will be best for you?   My guest is Lisa Aquillano, a Clinical Pharmacy Specialist in Multiple Sclerosis at Emory University...

This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS. My guest is Jodi Johnson, who is a paid spokesperson for the MS MindShift. Jodi has been living with MS for almost 12 years after having been diagnosed in January of 2008. Since her diagnosis, Jodi has shifted her perspective on the disease to focus on what sh...

My guest is Stubhy Pandav, the lead singer of Lucky Boys Confusion and The Hoodie Life . Last year, Stubhy was diagnosed with MS. Then, Stubhy's insurance company told him that he couldn't start the disease-modifying therapy that his neurologist had prescribed.   We'll talk with Stubhy about how he's managed to navigate this first year since his MS diagnosis, and we'll also talk with him about MS...

November is National Family Caregiver Month, and while I was at the 4th Annual National Caregiving Conference in Chicago, I met this week's guest, Caregiver Strategist Penny Patnaude. Penny and I talked about some of the things that caregivers want to be thinking about in planning their own strategy for providing great care to their loved one without losing themselves in the process.    I'll also...

This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS. My guest is Caroline Craven, who is a paid spokesperson for the MS MindShift. Caroline could not walk or see without assistance when she was first diagnosed with multiple sclerosis in 2001. Today she is thriving and shares her personal experiences, life hacks,...

Last week, the National MS Society and RealTalk MS announced a new partnership. And we're definitely talking about it!     My guest is Dr. Soha Saleh, a research scientist at Kessler Foundation's Center for Mobility and Rehabilitation Engineering Research, and we're talking about her innovative research in understanding how MS impacts dual-tasking -- something that all of us do, all day long.   We...

My guest this week is Dr. Mary Bailey, a neurologist specializing in MS care at the Mandell Center for Multiple Sclerosis in Hartford, Connecticut, and we're talking about some of the changes that occur as relapsing-remitting MS transitions to secondary progressive MS.   Since about 80% of the people living with relapsing-remitting MS will experience that transition to secondary progressive MS, I...

This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS. My guest is Yvonne DeSousa, who is a paid spokesperson for the MS MindShift. Yvonne was diagnosed with MS in 2009. She quickly discovered that humor was able to help settle her fears and act as a release. Years later, Yvonne has continued using humor to not on...

My guest this week is Dr. Silvana Costa, a research scientist in the Neuropsychology and Neuroscience Center at the Kessler Foundation. Dr. Costa's work is focused on cognitive impairment in MS, specifically, information processing speed, which is something that people living with MS often have to deal with. We'll talk with Dr. Costa about some of her specific research, along with a promising inte...

My guest this week is TV personality, Montel Williams. Since receiving his MS diagnosis in 1999, Montel has been a highly visible advocate for people living with MS. We're talking to Montel about his initial reaction to his own MS diagnosis, and what advice he would give to someone who was diagnosed with MS today (HINT: it's great advice!). We'll also talk to Montel about My MS Second Act, a new i...

This special episode of RealTalk MS is sponsored by Celgene and the MS MindShift initiative, which aims to educate about the important role the brain plays in MS. My guest is Ashley Ringstaff, who is a paid spokesperson for the MS MindShift. Ashley was diagnosed with relapsing-remitting MS at the age of 22. Many of us know that MS can be very unpredictable – never knowing what symptoms you'll have...

I'm back from attending the MS International Federation's People With MS Forum in Athens, Greece, and it was a remarkable few days spent with some truly remarkable people. In this episode of RealTalk MS, you'll meet two of those remarkable people. First, we'll talk with Dr. Laura Musambayi, the founder of the MS Association of Kenya. Dr. Musambayi will share her experiences in a country of 50 mill...

For almost 20 years, the CLIMB Study has been following thousands of MS patients, discovering so many aspects of multiple sclerosis and documenting how the disease changes over time. My guest is Dr. Tanuja Chitnis, Director of the CLIMB Study, Director of the Partners Pediatric Multiple Sclerosis Center at MassGeneral Hospital for Children, as well as the Director of the Translational Neuroimmunol...

When you're living with MS, it can feel as though you're taking a few extra things with you when you go to work. For instance, if you haven't told your employer that you've been diagnosed with MS, you're taking along the extra burden of having to keep a secret. You might be trying your best to manage your MS symptoms on the job, dealing with things like fatigue, vision problems, and even physical...

I imagine everyone involved in MS research has their own reasons that make it important to them. My guest this week is Dr. Anisha Doshi, and Dr. Doshi's reasons are personal and powerful. Dr. Doshi will also update us on her current research project, and we'll talk with Dr. Doshi about the path that women face as they pursue a career in Neurology.     You'll also hear Atara Biotherapeutics Chief M...

Sometimes, you can just look at someone and know how they're feeling. Our ability to "read people" is called social cognition. And we're learning that people living with MS can lose their social cognition skills, making every face-to-face interaction more difficult. My guest is Dr. Helen Genova, the Assistant Director of the Kessler Foundation's Center for Neuropsychology and Neuroscience Research...