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Need to Know with Sam & John
16 minutes | Apr 26, 2021
Welcome Back - Season 3 of Need to Know with Sam & John
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 firstname.lastname@example.org.
24 minutes | Apr 14, 2020
Episode 43 - You are the leading expert on YOUR MS!
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.
43 minutes | Mar 17, 2020
Episode 42 - Interview with the founder of MS4MS, Sam Greenberg
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.
49 minutes | Mar 10, 2020
Episode 41 - MS and Stem Cell Treatment - Interview with Kelly Tapper
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.
39 minutes | Feb 25, 2020
Episode 40 - A Face of MS - Interview with Chuck Knig
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.
36 minutes | Feb 18, 2020
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.
20 minutes | Feb 4, 2020
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.
31 minutes | Jan 28, 2020
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.
18 minutes | Jan 14, 2020
Episode 36 - Reframe, Reframe, Reframe
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.
17 minutes | Jan 7, 2020
Welcome Back - Season 2 of Need to Know
Welcome to Season 2 of Need to Know with Sam & John! In this episode, we recap our “off-season” as well as share a bit about the upcoming year.
17 minutes | Dec 10, 2019
Need to Know Season 1 Wrap-up
In this episode, we reflect on our first year as friends producing a podcast. We discuss our different episodes as well as our preparations for 2020. From the bottom of our hearts, we express our gratitude for allowing us to be a part of your world and are hopeful 2020 will bring bright, inspirational, and laughter-filled episodes. We wish all of you a joyous and blessed Christmas with your family and friends and look forward to catching you in a new year! Until then, always remember you are never alone!
48 minutes | Nov 19, 2019
Episode 35 - MS Neurologist, Dr. Mary Rensel
In this episode, we interview Dr. Mary Resel. Dr. Rensel is the neurologist for Sam’s sister, Nikki. She is an Assistant Professor of Medicine at the Cleveland Clinic Lerner College of Medicine and Director of Pediatric Multiple Sclerosis and Wellness at the Mellen Center of the Cleveland Clinic. We discuss with Dr. Rensel pediatric MS and research and how it may help shape the future for those living with MS. Our conversation with Dr. Rensel is informative and inspirational as well as hopeful. Note - to read more about the research taking place at the Cleveland Clinic, visit the Mellen Center for Multiple Sclerosis and click the Research & Clinical Trails tab. Interested in more information regarding the pediatric MS centers, visit Network of Pediatric Multiple Sclerosis Centers.
46 minutes | Nov 12, 2019
Episode 34 - National Caregivers Month - Interview with Ed Villella
In this episode, we chat with Sam’s dad, Ed about care-giving as we celebrate National Caregivers Month. While we share a lot of laughs we discuss his “all-in” commitment to Sam’s mom as her full-time caregiver. He explains how he gets through each day as well as the journey their lives have taken over the years since Kathy’s diagnosis. To watch the documentary about Ed and Kathy and learn about the life of someone with MS through the eyes of her caregiver, visit KV’s Krew, Inc. to view A Journey of Hope.
43 minutes | Oct 29, 2019
Episode 33 - Superman and MS Advocate - Curt Ehlinger
In this episode, we chat with our friend and John’s fellow MS Run the US Board Member, Curt Ehlinger. We learn about how Curt came to the MS community and the journey for his family with his mom’s MS diagnosis. We discuss the various activities Curt has participated in which include running, triathlons, biking and the Barkley Fall Classic and how it all began in 2009. To-date, Curt has participated in 15 Half Marathons, 16 Marathons, 19 Triathlons and 48 other races/events of various lengths. Visit The Barkley Fall Classic to learn more about the most recent event Curt completed.
25 minutes | Oct 15, 2019
MS News Update - MS Research
In this episode, we chat about the Multiple Sclerosis Association of America’s (MSAA) September 2019 Research Update. There are several studies we discuss as well as a recent study shared by the MS Society regarding myelin repair and why it may fall short. To read more about the MS Society’s update, check out New Study Shows Why Myelin Repair May Fall Short in MS.
52 minutes | Oct 8, 2019
Episode 32 - A Couple’s MS Journey - Dan and Jennifer Digmann
In this episode, we chat with our friends Dan and Jennifer Digmann. We learn about each of their diagnosis stories and how they met. An inspirational couple, Dan and Jennifer take on MS each and every day as each others’ caregivers. They are active volunteers with the National MS Society as well as hosts of an online radio show, “A Couple Takes on MS” and authors of “Despite MS, to Spite MS.” To learn more about Dan and Jennifer, read their blog, listen to their radio show, or order their book, visit https://danandjenniferdigmann.com/. Connect with Dan and Jennifer on Instagram (@digmannd) and Twitter (@DenJenDig).
25 minutes | Sep 30, 2019
MS News Update - Tackling High MS Drug Costs with Bari Talente, MS Society
In this episode, we chat with our friend Bari Talente, Executive VP, Advocacy, for the National MS Society. Bari explains specific legislation, HR3 - Lower Drug Costs Now Act of 2019, which addresses the high costs of MS disease modifying therapies. She expands on the importance of these difficult conversations in order to ensure individuals living with MS have access to affordable medications. She shares her experience during a recent Congressional Hearing where she testified on behalf of the MS community and how you are encouraged to get involved. Yes, we can all make a difference with respect to high drug costs. Stay up-to-date on HR3, as well as advocacy policies, by signing up for the MS Activist Network and following on Twitter (@MSactivist). See if your Legislator supports this new legislation at Congress.gov and sign up to get alerts as this important legislation moves forward.
24 minutes | Sep 24, 2019
Episode 31 - Fail Every Day and Surround Yourself with Enablers
In this episode, we chat about John’s rule #3 which is fail every day. We also discuss rule #4, surround yourself with enablers and not disablers. Learn more about each of these rules and John’s thoughts on why they are so important to someone living with MS.
46 minutes | Sep 17, 2019
Episode 30 - A MS Nurse's Message of Hope - Carol Chieffe
In this episode, we chat with John’s nurse, Carol Chieffe. Carol is part of Dr. Desai’s team (reference episode 18 to learn about Dr. Desai) and a member of John’s team of doctors. Carol has a beautiful and inspirational soul and it shows in her care for her patients. She relishes the opportunity to educate her patients as she cares for them as though they are her own children. As such, she recently presented Carol’s Protocol at the Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting to help patients manage injection site reactions. Her passion to be a part of this MS community is heartwarming and hopeful! The article John referenced in the episode is Highmark Health - Running Against Multiple Sclerosis.
22 minutes | Sep 3, 2019
Our Life Outside of MS - NFL Fantasy Football
In this episode, we discuss Fantasy Football and our teams! Find out who we drafted with the first picks in our fantasy leagues. There is also controversy and debate about being loyal Pittsburgh Steelers fans. We review John’s draft rating/report card as well as how Sam needs a new team name. This is a departure from our normal podcast topics yet a passion we both share. With the Labor Day Holiday and the beginning of the NFL Season, we felt it warranted this non MS related episode.
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