Advocacy & Policy Episodes

We take advantage of digital tools every day to make our lives easier. But when it comes to managing our health, there's still a long way to go. That's why the MS Society in the UK commissioned a report titled "Improving Care for People with MS: The Potential of Data & Technology". That report has just been published, and we're discussing some of the observations and recommendations contained in this remarkable report with my special guest, Michelle Mitchell, CEO of the MS Society in the UK. We...

MS Activist Marques Jones is running for public office in his home state of Virginia. Marques and I sat down to discuss how his role as an MS Activist led to his candidacy, and how his MS diagnosis has continued to inform his business life and his political life. We're also talking about the existential threat that now exists for people with pre-existing medical conditions in the U.S., how the MSAA can provide financial assistance for your MRI exam, how Ocrevus may delay the need for a wheelcha...

In 2004, the average wholesale price of available MS disease-modifying therapies was $16,000. In 2013, the average price was $61,000; last year, the average price was more than $83,000. That's why my guest this week is David Mitchell, founder and president of Patients for Affordable Drugs. We're also talking about the RealTalk MS Podcast Alexa Skill! If you already own an Amazon Echo, Dot, or any Alexa-enabled device, you can access all sorts of convenient features for listening to RealTalk MS!...

March is MS Awareness Month, and tomorrow we'll be observing the first ever Progressive MS Day, which is being celebrated by several MS advocacy groups and state governments around the United States. My guests on the podcast are Dan and Jennifer Digmann. Jennifer was diagnosed with Progressive MS in 1997, and Dan was diagnosed with relapsing-remitting MS in 2000. Dan & Jennifer met at a National MS Society event in 2002, and they were married in 2005. Together, Dan & Jennifer write an award-wi...

Decisions made by our legislators can have a direct impact on our healthcare, our financial well-being, and our overall quality of life. That's why next week, 300 MS Activists will be in Washington D.C. to hold more than 400 conversations with our elected officials about the legislative issues that are likely to have the greatest impact on people living with MS. My guest on this week's podcast is Bari Talente, Executive Vice President of Advocacy for the National MS Society. This week's entire ...

Multiple sclerosis doesn't respect borders, and that's why a global response to MS is so necessary. And that's where the MSIF comes in. My guest this week is Mr. Peer Banake, CEO of the MS International Federation. ACTRIMS -- the largest MS research conference in the United States -- took place last week in San Diego, California. We were there, and we're talking about the news and the research announcements that were made at the conference. We have a lot to talk about this week! Are you ready ...

Jon's guest on the podcast is Victoria Reese, founder of the We Are Illmatic campaign. We Are Illmatic is building awareness and providing support for women of color who are living with MS in their lives. We have good news about the U.S. Defense Department's MS Research Program, and the passage of the bipartisan RAISE Caregivers Act. We'll tell you how an MS patient's handwriting may predict a decline in movement, sensory, and cognitive skills. And we'll share some interesting research about a...

Whether it's research, news, or even pending legislation, there's a lot happening around the world that's going to impact families living with MS. In this week's podcast, we'll round up some of that news and bring you up to speed on some of the things that you ought to know about. We're talking about how the pending income tax legislation can be financially devastating to families living with MS - and we'll explain what you can do about it right now. We'll look at a new clinical trial testing a...

This week, we're talking about MS Activism with the former mayor of Sacramento, California and current MS Activist, Heather Fargo. In last week's podcast, we talked about the prescription drug price transparency bill that was recently signed into law in California. Heather played an important role in the passage of that law, and we'll be talking to her about why that law is so important to the MS community. We're also going to talk about why it's important to use your power as an MS Activist, an...

This week, RealTalk MS is all about MS research. We often hear about some of the important outcomes of MS research. New drugs, like Ocrevus, are introduced. New information, like the connection between gut bacteria and MS, is published. But how and where does an MS research project get its start? How does it get funded? How much multiple sclerosis research is actively taking place today? Jon's guest this week is Dr. Bruce Bebo, Executive Vice President of Research at the National Multiple Scler...