RealTalk MS

My guest is Diane Kramer, an MS Activist who has experienced some of the same obstacles and frustrations that so many people living with MS experience. But whether she's knocking on the doors of neurologists' offices in her area so that she can connect them with resources from the MS Society, or starting an MS support group in her community when she found there wasn't one, Diane is a force to be reckoned with.

In just a couple of weeks, the National MS Society is hosting its annual Public Policy Conference in Washington, D.C. The centerpiece of that conference is our Day On The Hill when 300 MS Activists meet with our Congressional Representatives and Senators to discuss the legislative issues that are most important to people affected by MS. My guest is Bari Talente, the Executive Vice President of Advocacy for the National MS Society and we're talking all about this year's Public Policy Conference.

My guest is Dr. Riley Bove, and we're talking about some of the things you might want to consider when you're thinking about getting pregnant, some important things to consider when you are pregnant, some things to discuss when you and your doctor are planning your delivery, and things to be aware of following your pregnancy.

This past year, a bill was introduced in the California State Assembly that would make it easier for the California Attorney General to prosecute pharmaceutical companies for so-called "pay for delay" deals. On January 1st, that bill, AB 824, became a law. My guest is the author of AB 824, California Assemblymember Jim Wood. We're talking about what it was like to guide a bill that the pharmaceutical industry came out against through the state legislature and see it signed into law. 

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. My guests are Tim Coetzee, the Chief Advocacy, Research, & Services Officer, and Bari Talente, the EVP of Advocacy for the National MS Society, and we're talking about the barriers to accessing MS medications and what can be done to bring those barriers down.

Last week, we attended the Pathways to Cures Think Tank. I think that we'll look back at this meeting as a historic moment. 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 extraordinary event, and we're devoting this entire episode of RealTalk MS to hearing from some of the participants and sharing the highlights of the meeting.

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 young adults living with MS. And every one of these adventures is offered at no cost to the participants.

Access to 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 living with MS. We're talking with Dr. Kratz about how My MS Toolkit was developed and what makes it such a unique online tool for people living with MS.

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 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, his coast-to-coast ride also raised MS awareness throughout Canada.

In this episode of RealTalk MS, we're re-visiting my conversation from ECTRIMS 2019, the largest MS research conference in the world, with Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society. We're also talking about a new report issued by RAND Europe, entitled "Exploring the Societal Burden of Multiple Sclerosis: A Study Into the Non-Clinical Impact of the Disease, Including Changes with Progression."

Is MS preventable? Is progressive MS modifiable? We'll tackle these questions and more with my guest, Professor Gavin Giovannoni, an academic neurologist based at Barts and The London School of Medicine and Dentistry, Queen Mary University London. It's a conversation you don't want to miss! We're also taking a look back at the major MS news stories of 2019. We're talking about new disease-modifying therapies, stem cell therapy, MS biomarkers, the skyrocketing cost of MS prescription medications & more!

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 was diagnosed with MS in 1986 and we're talking about how your brain health may be impacting your relationships as well as how to have meaningful relationships while balancing symptoms of MS.

No health insurance? Or you have health insurance, but your insurance company won't approve the specific MS disease-modifying therapy that your neurologist has prescribed for you? My guest is Lisa Aquillano, a Clinical Pharmacy Specialist in Multiple Sclerosis at Emory University Hospital in Atlanta, Georgia. And we're talking about specific steps that you can take to overcome the obstacles standing in the way of gaining access to your MS disease-modifying therapy.

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. Since her diagnosis in 2008 Jodi has shifted her perspective on MS to focus on what she can do, instead of what she cannot.  We're talking to Jodi about coping with MS through personal growth and resilience and how different lifestyle choices can have an impact on brain health.

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 Sucks: Singing for a Cure", a benefit concert that's raising funds for the Accelerated Cure Project for MS.