At the Consortium of Multiple Sclerosis Centers Annual Meeting, I learned about the Pediatric MS Alliance from Jill Blackburn. I met Dr. Miriam Franco and learned about the app that she's developed and you'll want to download. And I sat down with Dr. Rosalind Kalb and MS Activist Marques Jones to learn about MS Path 2 Care - a new set of educational modules designed to empower people living with MS to be active participants in their own care & treatment. We're also talking about a study that...
Jun 05, 2018•35 min•Season 1Ep. 38
I've invited a very special guest to talk about the subject that I've received -- by far -- the most requests to discuss on the podcast, and that's sexual function and MS. We're also talking about the International Progressive MS Alliance's future strategies, World MS Day, and we're giving away an Amazon Echo Dot! We have a lot to talk about! Are you ready for RealTalk MS? ____________ MS Conference Update :51 International Progressive MS Alliance Announces Future Strategies 4:06 World MS Day 6:...
May 29, 2018•36 min•Season 1Ep. 37
The RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management . Yesterday's session included a presentation on how some of the insights from stroke rehabilitation can be transferred to MS rehabilitation. There were detailed presentations on some of the key areas impacting translational s...
May 25, 2018•25 min•Season 1Ep. 36
Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management . The first day of the Scientific Congress featured amazing presentations, insightful panel discussions, world-renowned MS researchers, and even a couple of robots! Topics included how brain...
May 24, 2018•30 min•Season 1Ep. 35
Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management . In today's podcast, you'll hear from a renowned progressive MS researcher who is leading an international team of experts in a 3-year research study. You'll also hear from a trio of rehabi...
May 23, 2018•13 min•Season 1Ep. 34
Today -- and every day this week -- the RealTalk MS podcast is coming to you live from the Sheraton Centre Toronto Hotel in Toronto, Canada, where, tomorrow, the International Progressive MS Alliance kicks off its 3rd Scientific Congress. The theme of the event is Progressive MS -- Making a Difference Through Rehabilitation & Symptom Management , and on today's podcast episode, we're previewing some of what the attendees will be seeing and hearing. We're also talking about several MS rehabil...
May 22, 2018•16 min•Season 1Ep. 33
Living your best life while you're living with MS means learning how to manage and overcome the physical and psychological limitations that MS tries to impose. This week's guest, Dr. Kathleen Zackowski, Senior Director of Patient Management, Care, and Rehabilitation Research for the National MS Society, takes us on a deep dive into MS rehabilitation & symptom management. We're also talking about the FDA approval of Gilenya for treating Pediatric MS, President Donald Trump's announced " bluep...
May 15, 2018•40 min•Season 1Ep. 32
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!...
May 08, 2018•28 min•Season 1Ep. 31
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 podcast is Dr. Matthew Miles, the CEO of MS Research Australia, the largest non-profit organization dedic...
May 01, 2018•41 min•Season 1Ep. 30
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 therapy sooner, rather than later. The National MS Society has announced $14.2 million dollars in fundin...
Apr 24, 2018•25 min•Season 1Ep. 29
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. Emmanuelle Waubant, one of the true pioneers and experts in the field of pediatric MS. We're talking w...
Apr 17, 2018•31 min•Season 1Ep. 28
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 ride his bike 3,785 miles across the United States to honor his late mother, and raise money for MS rese...
Apr 10, 2018•26 min•Season 1Ep. 27
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 perspective of someone who is a medical specialist who treats patients with MS, and also someone who lives w...
Apr 03, 2018•30 min•Season 1Ep. 26
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 aw...
Mar 27, 2018•30 min•Season 1Ep. 25
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 has been proven to be effective in treating depression. We're also talking about a robotic arm brace tha...
Mar 20, 2018•26 min•Season 1Ep. 24
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 announcement about a new collaboration, and you'll even learn how you can be a part of MS researc...
Mar 13, 2018•37 min•Season 1Ep. 23
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 with MS today and their families. We have a lot to talk about! Are you ready for RealTalk MS?...
Mar 06, 2018•29 min•Season 1Ep. 22
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 p...
Feb 27, 2018•28 min•Season 1Ep. 21
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 other mobility impairments live independent lives by providing them with a very special service anim...
Feb 20, 2018•28 min•Season 1Ep. 20
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 Accelerated Cure Project's MS Minority Research Engagement Report here ). We're discussing the initial resul...
Feb 13, 2018•29 min•Season 1Ep. 19
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 fo...
Feb 06, 2018•30 min•Season 1Ep. 18
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 Australia have patented a molecule that's designed to protect the central nervous system and support myelin ...
Jan 30, 2018•25 min•Season 1Ep. 17
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 red flag for one stem cell treatment for MS that made promises it wasn't keeping. And we'll tell you a...
Jan 23, 2018•28 min•Season 1Ep. 16
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 h...
Jan 15, 2018•25 min•Season 1Ep. 15
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 state of California over prescription price transparency...and host Jon Strum will tell you why ...
Jan 09, 2018•16 min•Season 1Ep. 14
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 London, and Chair of the Alliance's Scientific Steering Committee. We're also talking about a study pu...
Dec 12, 2017•22 min•Season 1Ep. 13
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 lining up to bring this treatment to market? Hear what Dr. Voskuhl has to say about that and more in t...
Dec 05, 2017•24 min•Season 1Ep. 12
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 ...
Nov 28, 2017•18 min•Season 1Ep. 11
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 job doesn't come with an instruction manual. So we're going to be discussing: The real costs -- both f...
Nov 21, 2017•27 min•Season 1Ep. 10
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 talking about a study that may offer some good news about what seems to be a highly effective drug therapy f...
Nov 14, 2017•23 min•Season 1Ep. 9
