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 n2kwithsamandjohn@gmail.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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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).

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. 

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.

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.

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.

In this episode, we chat with our friend Nancy Weiland, who is a member of the Steering Committee for the NMSS’ Pittsburgh Women on the Move Luncheon. An inspirational afternoon held at the LeMont Restaurant on September 25, the luncheon is a way to support those who have been affected by MS, especially women. Learn more about Danelle Umstead who is the Keynote Speaker as well as past guests and of course, Nancy’s MS journey. For more information about the event, visit Women on the Move.

In this episode, we chat with Jon Franko, a true MS champion. He was the Segment 16 runner for the 2019 MS Run the US Ultra Relay, hitting the pavement for 174 miles in 6 days. He has run multiple marathons including the Boston Marathon. Since his diagnosis in 2016, Jon has biked more than 5,000 miles and run more than 3,500, raising close to $65,000 for MS research and programming. He is a trustee for the Gateway Area Chapter National MS Society as well as a co-founder of several organizations and volunteer with Big Brothers/Big Sisters. Jon is also the thinker and founder of gorilla76. Connect with Jon on social media to learn more about his MS journey as well as his commitment to MS fundraising and awareness (Instagram - jonfranko; Twitter - @JonFranko; Facebook - jon.franko). Note - Jon Franko and John Platt refer to a book they both have read and often revisit which is “Man’s Search for Meaning” by Viktor Frankl.

In this episode, we discuss accessibility as it relates to Sam's recent beach vacation. She shares about the Sand Scooter II patent-pending 4WD electric beach wheelchair courtesy of SandHelper which enabled her mom to maneuver the beach daily. We chat about small challenges the family experienced and overcame including an experience at a local restaurant. Have an accessibility story or suggestion for travel? We would also love to hear from all of you regarding your stories of overcoming accessibility obstacles and suggestions for travel (n2kwithsamandjohn@gmail.com).   Side note - During this episode, Sam mentions Caroline's Cart. To learn more about Caroline's story, the cart, etc. visit Caroline's Cart.

In this episode, we chat with Jim Lillicotch who is a Board Member for MuSic for MS. This annual Music Festival helps people with MS move forward through the power of music. Learn more about Jim’s connection to MS because of his wife Nancy. We talk details for this year’s MuSic for MS Festival which will be August 17 at a new location, The Pittsburgh Shrine Center Pavilion. Individuals living with MS can attend for free. Anyone else can purchase tickets, donate a raffle/auction item, be a baker for the Bake Sale, become a sponsor or event day volunteer, by visiting the Music for MS website. 

In this episode, Patti Barker, our beautiful, full of love friend shares her MS advocacy journey for her daughter, Channing Barker (episode 21). There are laughs, stories, and insight into her thoughts on having a daughter diagnosed with MS at the age of 16. Find out why she refers to herself as a mama grizzly and her commitment to not walk away from volunteering until MS means mystery solved. Learn about her long-time volunteer role with Uncorking the Cure for MS as well as the many different volunteer roles she has held with the National MS Society and why her heart has landed in advocacy.

In this episode, we chat with Jill Eisenberg and David Raimist about everything Bike MS! Jill and David share why they became involved in Bike MS, Bike MS logistics, and explain the Passport Program. We also discuss how many miles they have logged, the amazing jersey Jill’s team sports each year (Team Design Connection), their Bike MS goals, as well as their annual MS fundraising event, BrewFestforMS. To learn more about our inspiring friends and their fight to end MS visit, BrewFestforMS and to support them on their fundraising efforts visit each of their pages, Jill Eisenberg and David Raimist.

In this episode, we discuss everything baseball with former Major League Baseball (MLB) umpire, John Hirschbeck. We chat about baseball nicknames, a behind the scenes discussion on being a MLB umpire, his home plate and crew chief experience for some of baseball’s monumental moments, and his most cherished on the field moment. We talk about the 2019 MLB All-Star Game hosted in Cleveland, Ohio. Our episode also highlights some of the adversity John and his family have overcome with the loss of two sons to adrenoleukodystrophy (ALD). In memory of John and Michael, the Hirschbeck Family created the Magic of Michael Foundation whose mission is to inspire, empower, and provide hope to families enduring the “curveballs” of life.

In this episode, we discuss our journey over the last six months. We started this podcast with no technical audio experience, just a hope that we could connect with others. Learn about our budget set-up and listen as we reminisce about the different episodes. The journey has been one of growth and learning! We are asking our listeners to not only subscribe, but share our podcast with friends and leave us a review and rate the podcast. 

In this episode, we dial up our friend, Lydia Emily on the West Coast. A street artist, muralist, and oil painter, Lydia Emily is a cancer survivor who lives with MS. She is a terminally upbeat  individual who loves being a mom and sharing her views and passions through art. We chat about the day she was diagnosed, her journey as an artist, and a mom. Lydia Emily is inspiring, comical, and unbelievably genuine. Learn more about Lydia Emily by visiting her web site and connecting via social media.

In this episode, we feature our newest podcast format, called “phone-a-friend.” We spend time chatting with Channing Barker, who has been living with MS since the age of 16. Learn about her diagnosis journey, advocacy role, and her thoughts on life with MS while dating and in the workplace. Of course, there are endless laughs, a pink jacket with a peace sign, a trip to the White House, and the story of how we each met this radiant, beautiful, charismatic, amazing young woman.

In this MS News Update, we discuss the Multiple Sclerosis Association of America’s (MSAA) 2019 edition of its MS Research Update. “The publication focuses on research related to approved and experimental medications and therapies for the long-term treatment of multiple sclerosis.” Read all of the details in the MS Research Update.

In this episode, we chat with Nick & Adrienne Giangiordano. Nick was our first podcast guest living with MS (episode #6) and we brought him back with his amazing wife, Adrienne, to discuss their journey with MS. We learn about their reconnection post MS diagnosis, building a family and managing family life with MS, as well as their implementation of “The Spoon Theory” to communicate MS energy levels. They share a difficult moment when Nick’s MS flared and how MS has shaped their children’s lives.

In this MS News Update, we share all about World MS Day on Thursday, May 28. We chat about this year's campaign theme, "My Invisible MS" as well as the campaign video. John also describes his invisible symptoms. To learn more about World MS Day 2019 or learn how you are able to participate, visit the World MS Day website. We encourage everyone living with MS and those who have family and friends living with MS, to wear orange as well as to share your story on social media. Be sure to tag your post with #MyInvisibleMS and #N2KwithSamandJohn. 

In this episode, we have an extremely lively conversation with Sam’s family. The conversation is real, raw, and full of laughter. As we always say if you are not laughing you will be crying. Our discussion provides great insight in to Sam’s family dynamic and what it is like to have two individuals in one family living with MS.

In today’s MS News Update, we discuss the MS Society’s commitment for $24.4 million in multi-year funding for 64 new MS research projects. We chat about several of the studies of interest to each of us as well what this means for the MS community. Read the news article highlighting the 64 MS research projects by visiting the Society’s web site or download a summary of the new research projects for details on each study. Learn more about the process for how a drug becomes approved by downloading the U.S Food and Drug Administration Drug Approval Process pamphlet.

In this episode, we chat with Dr. Troy Desai who is John’s neurologist. We chat about his professional background, his decision to care for individuals living with MS, and his participation in the Pittsburgh Marathon as a relay member. This year, Allegheny Health Network has four relay teams, AHN Against MS, participating in the Marathon on May 5 and once again, Dr. Desai will be a runner. Dr. Desai’s commitment to the MS community is inspiring and heartwarming.

In this episode, we share more about KV’s Krew, Inc. which is a non-profit organization that was created by Sam and the Villella Family in 2012. We chat about how KV’s Krew came to fruition and it’s primary goal. We also discuss the fundraising efforts and who benefits from the proceeds that are raised each year.

In the first Need to Know MS News Update, we discuss two new medications that were recently approved by the U.S. Food and Drug Administration. Information on Mavenclad and Mayzent are available on the National MS Society's website. Prescribing information for Mavenclad and Mayzent is also available via each drug’s website.

In this episode, we recap John’s participation in the 123rd Annual Boston Marathon. He shares an Instagram post he wrote after the race. John also shares his thoughts pre, during, and post marathon! There is a lot of emotion in this episode and of course, a lot of laughs.

In this episode, we have a special guest with us...Lauren Wentz. Lauren is a physical therapist with a huge heart, loves helping others, and has become an MS advocate since she met John. She will run the 2019 Boston Marathon with John as his guide and she will also be the segment 17 runner for this year’s MS Run the US Relay. Learn more about Lauren as well as hear some fun stories about the last time she ran the Boston Marathon with John and her excitement for being a relay runner this year for MS Run the US. To financially support Lauren’s segment of MS Run the US visit Segment 17 - Lauren Wentz.

In this episode, we chat with John’s wife, Aimee and daughters, Julia and Olivia. It is the first time that we bring one of our family’s to the podcast to share the journey with a family member who is living with MS. We share a lot of laughs and even some tears as we chat about empathy, Kennywood, John walking with a cane, the Boston Marathon and much more.

In this episode, we discuss John’s Rule #2 - movement is life. Rule #1 was discussed in episode #2 and Rule #1a (Disease Modifying Therapies) was the topic of conversation in episode #3. We share the importance of movement for individuals living with MS and the benefits and we chat about the Exercising Your Options article in the Winter 2018 - 2019 edition of Momentum, as well.

In this episode, we chat about our trip to Washington D.C. for the National MS Society's annual Public Policy Conference. We share about our experience, recognize a few fellow activists as well as elected officials and of course, information you need to know about Capitol Hill.

In this episode, we chat about MS Awareness Week, which is March 10 - 16, 2019. We share how each of us has spent our MS Awareness Week and we share how you are able to Get Involved with the National MS Society. We also discuss staying connected on social media so be sure to follow us on Instagram (@n2kwithsamandjohn) as well as the MS Society (@mssociety). And do not forget to check out the MS Society’s Breakthrough MS video as well as the inspirational “We Believe” video.

In this episode, we discuss the National MS Society’s annual Public Policy Conference in Washington, D.C. from March 3 - 5. We will be joining over 300 activists on Capitol Hill on Tuesday, March 5. We also chat about the policies that we will be discussing with our legislators not only on Hill Day, but also throughout the year. Visit the NMSS’s Current Advocacy Issues page to learn more about each issue. Interested in becoming an MS activist, learn about the different options available through the NMSS Become an MS Activist page. To learn more about PCORI, visit their multiple sclerosis page.

In this episode, we chat with Sarah Dickey who is the creator of Cool Creative Press and author of Ode to Love and Sweetly Seeking. A lover of life, Sarah is a heart centered hypnotherapist, transpersonal coach, and yoga instructor. She is a beautiful soul that is inspiring those around her each and every day with her passion and enthusiasm to live a life full of intention and fierceness. Visit Sarah's web site for more information about her or to purchase one of her books or awesome pieces of goodness!

In this episode, we take our first field trip to Birdfish Brewing Co. in Columbiana, OH. We chat with two of the owners, Jon and Jared, about the process of making craft beer, how the name Birdfish Brewing Co. came to be, how they name their beers and of course, lots more. We loved taste testing their brews and taking a tour of the brew house. Check out Birdfish Brewing Co. for more information about their beers and events. And if you are local to the Mahoning Valley (Columbiana area) be sure to stop by Up Top or Down Low...we promise you won't be disappointed!

In this episode, we chat about our interview with Nick Giangiordano (Episode 6), the many commonalities of multiple sclerosis (MS) as well as the importance to share. We discuss again why we created this podcast.

In this episode, we are joined by Nick Giangiordano. Nick shares with us about being medically discharged from the U.S. Marine Corps and although his life has changed from multiple sclerosis (MS) how he has adapted. We also discuss the Multiple Sclerosis Research Program (MSRP), which is part of the Congressionally Directed Medical Research Program (CDMRP) and how it relates to MS. Although we will discuss the CDMRP in a future episode, the National Multiple Sclerosis Society (NMSS) provides some information on the MS Research page. More information regarding the MSRP is available on the Multiple Sclerosis page of the CDMRP.

In this episode, we discuss the newest release of information in which the Center for Disease Control and Prevention (CDC) will study multiple sclerosis (MS) at the launch of the National Neurological Conditions Surveillance System (NNCSS). We share information from the article, "CDC to Study Multiple Sclerosis in Launch of New National Neurological Conditions Surveillance System" as well as "Preliminary Results of MS Prevalence Study Estimate Nearly 1 Million Living with MS in the U.S." Additionally, the NMSS' MS Prevalence page offers valuable information regarding this topic.   

In this episode, we explore disease modifying therapies (DMT’s) a little more as well as discuss reliable resources of information such as the National Multiple Sclerosis Society (NMSS) and the American Academy of Neurology (AAN). We also discuss an article, “New MS treatment guidelines” from the NMSS’ quarterly publication, Momentum. The guidelines from the AAN referenced in the article and podcast, are under the Clinician Summary box. And finally, there is a list of medications provided by the NMSS to "Modify the disease course" that is a great reference as well.