Advocacy & Policy Episodes
Explore discussions on advocacy efforts, healthcare policies, and legislative changes that impact the MS community, aimed at empowering individuals living with MS.
79
Feb. 25, 2019
Episode 79: Caregiver Assurance -- A Better Way of Connecting Caregivers to the Support They Need
No matter what sort of challenge a caregiver may be facing -- financial, emotional, or just trying to find the right resources at the right time, every caregiver challenge is made more difficult by that accompanying feeling of isolation that so many caregivers experience. My guest is Heidi Telschow, manager of Fairview Health Services' Caregiver Assurance program, a unique program designed to seamlessly connect caregivers to the resources they need. We're also talking about the eye-popping inc...
78
Feb. 18, 2019
Episode 78: The Importance of MS Advocacy with Bari Talente
Over the past year, we've seen our access to affordable, quality healthcare come under unprecedented attack. We've seen a federal judge declare the Affordable Care Act to be unconstitutional. And we continue to see our access to affordable prescription medications -- the medications that have been shown to delay the progression of MS and extend the quality of life for everyone living with MS -- that access remains threatened by the constant skyrocketing cost of those medications. That's why advo...
77
Feb. 11, 2019
Episode 77: Shift.ms with Founder George Pepper & Aoife Kirwan
George Pepper was diagnosed with multiple sclerosis in 2009, at the age of 22. He initially found it difficult to connect with others his own age who were living with MS, so George set up a website where people living with MS could meet and share their experiences. That website evolved into an online community called shift.ms, and today, more than 18,000 people participate in the shift.ms community. My guests today are the founder of shift.ms, George Pepper, and Aoife Kirwan, a member of the shi...
73
Jan. 14, 2019
Episode 73: Making Connections with MSPals Mary Pettigrew
Recent research suggests that loneliness is one more invisible symptom of MS. But social outreach and interaction have never been more accessible. My guest is Mary Pettigrew, an MS Warrior and social media phenom. In 2014, Mary launched MSPals, a Twitter group that has evolved into a community of more than 5,000 followers. We're talking with Mary about the benefits of connecting online and the importance of finding your creative outlet. We're also talking about new research on the severity and ...
66
Nov. 26, 2018
Episode 66: Embracing Carers with EMD Serono's Scott Williams
We're into the final few days of National Family Caregivers Month, and my guest on the podcast is Scott Williams, Vice President, Head of Global Patient Advocacy and Strategic Partnerships at EMD Serono. We're talking with Scott about EMD Serono's commitment to MS caregivers. We're also talking about creating a caregiver protocol that becomes part of the conversation in the neurologist's office as soon as someone is newly diagnosed with MS. We'll tell you about the FDA's new warning about stopp...
62
Oct. 29, 2018
Episode 62: New Guidelines for Managing MS Cognitive Dysfunction with Dr. John DeLuca
Cognitive dysfunction can profoundly affect people living with MS, yet it's frequently overlooked and left untreated. That's why the National MS Society convened a working group of world-class experts to explore how cognitive dysfunction was being assessed and to develop a set of guidelines designed to improve the process of cognitive screening and management in MS care. My guest is Dr. John DeLuca, the Senior Vice-President of Research & Training at the Kessler Foundation, and the co-author of...
61
Oct. 22, 2018
Episode 61: Voting IS MS Advocacy with MS Activist Karen Jackson
We're 2 weeks away from an event that's going to have an impact on every person in the United States who's living with MS...or any other chronic illness. Because in 2 weeks time - on November 6th - an election's taking place, and healthcare is on the ballot. Maybe not directly...maybe not explicitly...but make no mistake, the choices that voters in America make on election day are going to have a huge affect on our access to healthcare, the cost of healthcare, and the protection that exists toda...
55
Oct. 1, 2018
Episode 55: Minority Inclusion & MS -- We are illmatic with Victoria Reese
A lot of people visit the RealTalk MS website to listen to each podcast episode. I wanted to make that easier to do, so last week I released the RealTalk MS app for iOS or Android smartphones and tablets. The app will always have the latest episode of RealTalk MS cued up and ready for you to listen to, and it also lets me share all kinds of bonus content with you. Head to the Apple App Store to download the iOS version of the app, or the Google Play Store to download the Android version of the ...
46
July 30, 2018
Episode 46: Using Data & Technology to Improve MS Care with Michelle Mitchell, CEO of MS Society UK
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...
40
June 18, 2018
Episode 40: An MS Activist Is Running for Office with Marques Jones
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...