Welcome to Season 3 of Need to Know with Sam & John! In this episode, we discuss two new social media platforms. For more information or to connect with us on Clubhouse, be sure to email us at email@example.com.
In this episode, we discuss John’s rule #6, which is you are the leading expert on YOUR MS. John discusses the realization, value, and importance as an individual living with MS while properly and accurately sharing this experience. Because of the ‘snowflake’ nature of multiple sclerosis, you have the opportunity to share your experiences, many of which are specific to you, making you the leading expert. Through this rule, John has gained the confidence to share his expertise as a regular consumer peer reviewer and mentor for the MS Research Program under the Congressionally Directed Medical Research Program. Your experience with MS matters and we insightfully advance MS research through your expertise as well.
In this episode, we chat with Sam Greenberg, the founder of MS4MS. We learn how playing the game he loved, baseball, was at the foundation for the birth of MS4MS. We also learn how the mission has changed over the years and now MS4MS is a platform for all MS Warriors to bring greater awareness to those living with the disease. Sam discusses the John Hopkins Project Restore which is the current primary beneficiary of funds raised by MS4MS as well as their commitment to donate a portion of their proceeds to families affected by MS. He also shares more about #spreadingORANGE and how their reach has extended beyond the baseball community to include basketball, football, and hockey. For more about the amazing work Sam and his team are doing, the upcoming events, or how you are able to be a part of #spreadingORANGE, visit MS4MS.
EPISODE UPDATE - the episode with Sam was recorded prior to the NCAA cancelling March Madness; therefore, the fundraising event Sam discusses in the episode will not take place in 2020.
In this episode, we discuss HSCT (Hematopoietic Stem Cell Transplantation) and Kelly’s experience as one of the first individuals to have the treatment. Kelly is an energetic woman full of life and passion which remained throughout the entire transplant. During the discussion, we learn more about the qualifying process as well as her journey through the clinical trial, treatment, and recovery. We also learn about Kelly’s magical experience at the Pittsburgh Penguins game. Be sure to read, “There’s hope” by Sam Kason, to learn about Erin McCann’s MS journey and Kelly’s recap of our Meet and Greet.
In this episode, we chat with our friend Chuck Knight who is the Chairman of the Board for the PA Keystone Chapter of the National MS Society. We discuss Chuck’s MS journey as well as the ups and downs of living with MS for the past two decades including the changes he has seen since his diagnosis.
Episode 39 - MS Drug Pricing Discussion with the Executive VP, Advocacy for the MS Society, Bari Talente
In this episode, we discuss high MS drug pricing with the Executive VP, Advocacy for the MS Society, Bari Talente. We learn about the strides being made each day to control high drug prices as well as the social challenges and change that is needed. Bari also explains the impact of generic MS medications on drug pricing and the new study recently released by the MS Society. To learn more about the topics in the episode, reference information on access to medication, public policies, or learn how to become a MS activist. Do not forget to read the article mentioned, New Survey Shows 40% of People with MS Alter or Stop Taking Medications Due to High Cost or Even with a New Generic on the Market, MS Drug Prices Have Tripled in 7 Years. If you are interested in reaching out to your elected official and are unable to identify the individual, please be sure to contact us and we will be more than happy to guide you.
Episode 38 - Interview with the Chief Science Geek, Dr. Bruce Bebo (Executive VP, Research at National MS Society) - Part 2
In this episode, we continue our discussion with Dr. Bruce Bebo who is the Executive VP of Research for the National MS Society in part two of our two-part series. We explore the focus of research for the Society in 2020, “Pathways to Cures” and the road map for stopping, restoring, and ending MS! Dr. Bebo shares the importance of a lifestyle plan as well as more about the MS Navigator Program (accessible online, via email at ContactUsNMSS@nmss.org, or by calling 1-800-344-4867). For more information about the MS Navigator program, on-going research, and up-to-date information, visit the National Multiple Sclerosis Society; a site of information comprised of unbiased, fact-based, and reliable articles and resources.
Episode 37 - Interview with the Chief Science Geek, Dr. Bruce Bebo (Executive VP, Research at National MS Society) - Part 1
In this episode, which is the first of a two-part series, we chat with Dr. Bruce Bebo the Executive VP of Research for the National MS Society. Dr. Bebo discusses his personal connection with MS as well Disease Modifying Therapies (DMT’s) and how far we’ve come in the last two decades. He also shares information on the outlook of medications in the pipeline and discusses funding for research studies.
In this episode, we discuss John’s rule #5, which is reframe, reframe, reframe. Are you a glass half empty or half full type of person? What if there’s a 3rd option? John touches upon Wabi-Sabi and Kintsugi (golden repair) concepts, which he learned from his psychologist. Reframing is a critical part of John’s life, helping him to mentally overcome living with MS. John does not ‘have’ MS, he is an individual living ‘with’ MS. Multiple sclerosis is as much John, as he it.