RealTalk MS

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...

We have a lot to talk about in this podcast episode! First, a big announcement...the RealTalk MS Podcast has its own Amazon 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! (And if you don't yet have an Alexa-enabled device, this might be one more reason to get one!)     My guest on the p...

The American Academy of Neurology (AAN) is holding its Annual Meeting this week in Los Angeles. And with more than 10,000 neurologists all in one place, we're talking about a LOT of news coming out of that conference.   Just some of the topics we're talking about on this week's podcast: The AAN announced new guidelines for treating MS. A new study will convince you to begin MS disease-modifying th...

When we think about MS, we tend to think about it as an adult disease. But the National MS Society reminds us that between 8,000 and 10,000 children up to 18 years old are living with MS in the United States. And studies suggest that between 2 and 5% of everyone living with MS has a history of experiencing the onset of at least one MS symptom before the age of 18.     My guest on the podcast is Dr...

As technology advances at an ever increasing rate, it's speeding up the pace of scientific discovery. In this week's podcast, we're looking at new tech tools -- smartphone apps, desktop programs, and mobile technology -- that will change the way you manage MS fatigue, anxiety, foot drop, MS rehab, and more.  And you'll meet this week's guest, Jayce Riley, an MS Road Warrior who is preparing to rid...

  My podcast guest Stephanie Buxhoeveden was diagnosed with MS when she was 25 years old, working as a neurosurgical ICU nurse. Today, Stephanie is a board-certified Multiple Sclerosis Nurse, she is a Nurse Practitioner and she is the Co-Director of the MS Comprehensive Care Center where she has also been a patient.     Stephanie will share some of her experiences and observations from the dual pe...

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...

Depression affects over one million people around the world who are living with MS. And when you fail to treat depression, every other aspect of life seems to get worse - and that can include your MS symptoms.   My guest on this week's podcast is Dr. Athena Robinson, the Chief Clinical Officer at Woebot Labs, and we're talking about Woebot -- a breakthrough app that lives on your smartphone and ha...

The Accelerated Cure Project for Multiple Sclerosis is a national non-profit organization dedicated to accelerating advances toward a cure for MS. My guests on this week's podcast are Dr. Robert McBurney, the President & CEO of the Accelerated Cure Project for MS, and David Gwynne, who manages their Alliances & Collaborations. We're talking about some of their major initiatives, their recent annou...

To kick off MS Awareness Month, we'll go inside a private VIP research briefing where you'll hear 3 award-winning MS research scientists tell us how their work is impacting our understanding of multiple sclerosis. Then, you'll meet my special guest, Emily Blosberg, founder of Oscar, the MS Monkey. Emily is an amazing young lady who's making life better for some of the youngest folks who are living...

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...

While we're tracking the breakthroughs and discoveries that move us closer to solving the riddle of multiple sclerosis, it's also important to remember that people living with MS need help today. Some of them need help with even the most basic sorts of daily tasks. My guests on the podcast are Angela Lett and Alison Payne from Helping Hands, a non-profit organization that helps adults with MS and...

If you're looking for  no-cost customized, personalized, one-on-one expert advice on all sorts of issues that people with MS encounter, you're going to want to pay attention to my conversation with Kay Julian, Executive Vice-President of Services at the National MS Society.  We're also talking about the demographic imbalance in MS clinical trials, and why that matters. (And you can find the Accele...

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 ann...

Sometimes, important breakthroughs can come from unexpected places. This week, our guest is Oded Ben Dov, an Israeli game developer who ended up creating life-changing technology designed to help people living with MS, ALS, and other disabilities. We're talking about some exciting news in Progressive MS research. We're also talking about a possible treatment for MS fatigue. Researchers in Australi...

Robots?? Really??? The answer is YES! Dr. Maja Mataric joins us on the podcast, and we're talking about how socially assistive robots could be real game-changers for people living with MS and other chronic conditions, as well as their caregivers. We're breaking down the specific ways that the new U.S. tax code will impact people living with MS. We're also talking about how the FDA just raised a re...

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 dec...

It's a new year and we have a lot to talk about! There's good news about new clinical trials...the FDA has given a "Breakthrough Therapy" designation for the first MS treatment approved for children and teens living with MS...UCLA researchers have identified why estrogen seems to have real potential as a treatment for MS...prices for some MS drugs are going up...pharmaceutical companies are suing...

The International Progressive MS Alliance is an unprecedented global alliance of MS organizations, researchers, clinicians, pharmaceutical companies, and people living with progressive MS, transforming the landscape of multiple sclerosis. This week, we're talking about the work and the progress of the Alliance with Professor Alan Thompson, Dean of Faculty of Brain Sciences at University College Lo...

Multiple sclerosis affects men and women differently. Women are 3 times more likely to get MS, but men often develop more significant disabilities from MS. This week's guest, Dr. Rhonda Voskuhl, is a trailblazer in not only exploring the differences between the sexes in MS, but in identifying what seems to be a safe and effective treatment for MS symptoms. So why aren't pharmaceutical companies li...

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...

November is National Family Caregivers Month, and we're talking all about caregiving. Being a caregiver for a family member with MS or any chronic illness can be one of the greatest blessings that a person may receive. It can also be one of the most stress-producing, anxiety-creating, and even life-threatening undertakings that a person may endure. No one ever applies to be a caregiver, and the jo...

Experts estimate that about 50% of the people living with MS are impacted by depression. And left untreated, depression can darken your entire outlook on the world. It has a way of making everything less . We're going to explore MS and depression with my guest, Dr. Amy Sullivan, Director of Behavioral Medicine at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic.   We're also talkin...

This week's guests are Doctors Lee Hartswell and Katherine Heller, the co-primary investigators of the MS MOSAIC study from Duke University. Everyone listening to our podcast is eligible to participate in this study -- even if you don't have MS. And all of the data collection will be done through your smartphone, so you won't even have to leave home! More than just a study that will help us learn...

Last week, more than 9,000 MS research scientists, physicians, and pharmaceutical industry experts attended ECTRIMS-ACTRIMS, the largest annual international MS research conference in the world. And we're devoting this week's podcast episode to talking about what they were talking about! Welcome to the RealTalk MS ECTRIMS Round-Up! You'll find out about how the "official" number of people with MS...