IBDetermined
Created to discuss living with Crohn's disease and made for adults, kids, teens, and families to encourage them to find ways to overcome obstacles, small and large. We will invite guests from multiple perspectives to give us insight on how they have handled challenges and what they did to get through them. Some episodes will focus on open and honest discussions about Crohn's disease from a caregiver and patient perspective. We will talk to others with IBD, chronic illnesses, and life changing situations people have learned to navigate. Hosted by a mom and son duo who had their lives flipped...
S6 Episode 5 - Insurance is denying infusions at our children's hospital. But, is this bad news?!
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We received a letter from insurance that upset all of us. Mason was no longer able to receive infusions at Rady Children's Hospital. We have been getting them there the past 6.5 years. But after speaking with his doctor, understanding how much more our hospital is charging, and touring a new infusion center, we felt so much better. Denial letters are never easy, but this one has been unexpected in a few silver linings! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring...
S6 Episode 4 - Getting through fun events when you are having a challenging day.
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We recently went to an event for someone we really care about. It was a great party but it also got us to thinking how a lot of IBD patients have to hide their feelings, not eat, things like that. We decided to have a discussion about these kind of things and would love to know how you handle events yourself! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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S6 Episode 3 - Will we someday be able to predict IBD before it ever starts?
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Today we go into a recent article by the Crohn's and Colitis Foundation. It caught our attention because it goes into what is currently being done to predict IBD before it starts. Hear our thoughts as we go through the article! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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S6 Episode 2 - What if Crohn's disease is more than one disease? What if it were different subsets?
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We have talked about it before but it deserved another discussion. What if Crohn's disease is so different for everyone because there are different subsets of it? What if it was separate diseases entirely? How would his affect the way we view it and treat it? We get more into this on today's episode! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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S6 Episode 1 - We update listeners on Mason, life, and our new lesson plan books we published!
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Welcome to a new season!! Season 6 opens with catching up on how Mason is doing, we talk about our candles business, insect additions to the family, and show off our new lesson plan books we published!! They are made to accompany our newest book, "Not Your Average Food Pyramid" and are for grades K-2 and 3-5. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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S5 Episode 16 - Is Mason in a Crohn's flare? We go over what is currently going on!
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As most of our listeners might know, there is that familiar moment of panic, despair, frustration when things change. It can happen overnight and in a matter of minutes. And sometimes it is hard to know what is going on, no matter how many flares you have had before. Things have been challenging the past few weeks and we wanted to be honest as a caregiver/parent and patient/teen on what these moments of uncertainty are like. We are family friendly and want our audience to be involved! Listen together, separately, but...
S5 Episode 15 - Why it is so important to be a support and to have support in the IBD world!
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We briefly discuss our newest book and talk about a few of the stories we included. We wanted to share a story of where Mason found support and how those new friendships both helped to heal him, but also encouraged him to want to be that support for others. Finding support can be found in so many different ways and it is very important for roller coaster diseases like IBD. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to...
S5 Episode 14- We look into what were the most searched IBD questions of the week!
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Sometimes it is interesting to see what other patients are searching. It helps give you an idea of similar concerns or questions as well as alerts you to new articles out there. We decided to do a search and go over them as we find them. It was interesting to see what you all are asking! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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S5 Episode 13- Finding joy and the silver linings in a difficult and challenging IBD diagnosis.
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We just published our second book and we are really hoping it helps patients reframe their outlooks. How you choose to grieve, to celebrate, to handle a diagnosis, is your choice. But we wanted to share what has helped Mason and us (as his parents and caregivers) find ways to continue to find joy and see the silver linings to live life to the fullest. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on...
S5 Episode 12 - Tips to help prepare for a smoother transition from pediatric care to adult care!
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Even though Mason isn't quite to moving to adult care yet, we realize listeners might be at different ages. Some might be adults, while some might be very early onset. We wanted to sit down and go over the ways you can begin to think and prepare for moving to adult care. This disease is difficult on adults, and can be even more daunting for a teen going to college or working a first job. We hope our tips help ease the stress and will lead to better care management by your teen...
S5 Episode 11 - We published a new book!! Learn all about "Not Your Average Food Pyramid"!!
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Reggie is back! Today we finally reveal the name of our new children's book and the second one in the series. It took around 8 months and we are so proud to tell you all about it! Join us as we take you through the process of a book we can't wait to share with all of you! We hope you enjoy this episode as much as we enjoyed researching it! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention...
S5 Episode 10 - The High Price and Process of Biologics Explained!
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We are finally back to our short series on treatments and biologics. Today we go over the expenses associated with developing and manufacturing a biologic. We might not like the prices but it is important to understand if we ever hope to make changes that benefit everyone. We hope you enjoy this episode as much as we enjoyed researching it! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
www.goodkarmastand...
S5 Episode 9 - How to handle unwanted advice and opinions from friends, family, & strangers!
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We have discussed the difficulty of outside opinions and judgement with IBD. Today we read an anonymous letter we received from a "neighbor". Might have been well-intended but the advice was dangerous. We discuss the ways you can support and help patients when offering advice but mainly are her to say we get it, we see you, and we know the opinions can be so frustrating. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics...
S5 Episode 8 - We are celebrating our 100th episode!!
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Today is a big day for the IBDetermined podcast family. You have made it with us to our 100th episode! We never had any idea how many podcasts we would create and we sure are happy we have made it to the big 100. We are also excited to keep going and continue to make podcasts! Join us as we reminisce and make a special announcement just for our listeners. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some...
S5 Episode 7 - Why are Pharma and Biosciences accused of not wanting cures? Why aren't they trusted?
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On today's episode we are continuing a series on better understanding biologics and expensive treatments. Today we are covering the reasons bioscience companies and pharmaceutical companies are accused of not wanting a cure. We examine why these claims are being made, how accurate they are, and why some people just don't trust them. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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https://www.karmatudecandles.com/karmatude-clips<...
S5 Episode 6 - How IBD treatments have changed in the past 20 years!
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On today's episode we are beginning a series on better understanding biologics and expensive treatments. Our hope is to create more awareness and hopefully spark change and understanding. We begin this series by going over a brief history of how treatments have changed over the past 20 years, which wasn't too long ago! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
www.goodkarmastand.com
https://www.karmatudecandles.com/karmatude-clips
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S5 Episode 5 - We discuss an article on how step therapy is affecting young adults with IBD!
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On today's episode we go over a recent article from the Crohn's & Colitis Foundation. It is about a study and how step therapy affects young adults in particular. It is helpful to better understand how to help young adults facing the challenges of step therapy. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
Link to book: https://a.co/d/0azVaFkp
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S5 Episode 4 - We talk all about Calprotectin tests and give you an update on Mason's health!
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On today's episode we discuss what Calprotectin tests are, how the scores work, and why your results might be a clue as to where your inflammation is located. Mason discusses his most recent results and why he is no longer in lab remission. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
Link to book: https://a.co/d/0azVaFkp
www.goodkarmastand.com
https://www.karmatudecandles.com/karmatude-clips
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S5 Episode 3 - We review a book about the immune system by Philipp Dettmer!
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We discuss a book called "Immune: A Journey Into the Mysterious System That Keeps You Alive" by Philipp Dettmer. We highly recommend it for anyone but it was particularly interesting to us as we made connections to the IBD world. And we have more exciting news about jumping spiders. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
Link to book: https://a.co/d/0azVaFkp
www.goodkarmastand.com
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S5 Episode 2 - Overcoming fears and making difficult IBD decisions based on facts, not fear.
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Having IBD can be scary and confusing. When you have to make decisions it is easy to be afraid of the unknown. We go over how we help ease those fears so we can make good decisions that are based on facts. We hope our techniques might help you empower yourself and make the best decisions for your health! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
www.goodkarmastand...
S5 Episode 1 - What does a cure for Crohn's Disease look like and how close are we to a cure?
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Welcome to Season 5 Episode 1! We are excited to start a new season in the new year. We wanted to kick it off with a topic and question we hear about often, is Crohn's curable? But then we got to thinking what a cure would look like. We go further into both topics and hope you find some hope in learning how the future of this disease is changing and what that could look like! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we...
S4 Episode 17 - We discuss our holiday and favorite family-friendly Christmas movies!
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Welcome to S4 episode 17! Mason got to pick what he wanted to end the year and final season 4 with and he chose Christmas movies. We sometimes do Christmas Day throughout the year. When Mason is having a tough time we watch Christmas movies, bake, do whatever we can to enjoy the joy the holiday brings him. Enjoy his list of Christmas movies the whole family can watch together. He wanted to share in case any of you are having a tough day and want to watch something you will enjoy. Happy New Year...
S4 Episode 16 - Major IBD breakthroughs, developments, and news stories from 2025!
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Welcome to S4 episode 16! As we head towards the end of 2025, we wanted to cover IBD breakthroughs, treatment developments and other stories that were in the news. We felt these stories were important to share because a lot of times there are click bait stories out there that can be misleading. But most of all we think it is important to share the hope, support, and direction research is heading! We included links for further reading. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we...
S4 Episode 15- It is IBD Awareness Week!
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Welcome to S4 episode 15! It is IBD Awareness week but also a shorter show. We both ended up with colds but we didn't want to miss a podcast on such an important week. Use this week to tell your story, to raise awareness, and to find support! Feel free to comment and share your own stories with IBD! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
www.goodkarmastand.com
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S4 Episode 14 - We discuss the challenges of the holidays and offer solutions to help ease stress!
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Welcome to S4 episode 14! We know there is a lot to consider with IBD on a normal day. We know the holidays is even more demanding and our goal is to discuss common problems and offer solutions. This disease is never fair and it isn't right that you should have to have more stress during this time of the year. Our holiday guide will help prepare you so you can sail into the holidays and hopefully enjoy "the most wonderful time of the year". We are family friendly and want our audience to...
S4 Episode 13 - Does having IBD mean catching colds and viruses more easily? What to know!
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Welcome to S4 episode 13! This time of year brings out a lot of questions about IBD and getting through cold and flu season. We go over risks of getting sick, treatments, ways we minimize risk, and things to consider if you have IBD. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
Links used in episode:
https://www.everydayhealth.com/crohns-disease/what-know-about-cold-flu/
https://pmc.ncbi.nlm.nih.gov/articles...
S4 Episode 12 - Michelle is Volunteer of the Year & more about the Crohn's & Colitis Foundation Gala
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Welcome to S4 episode 12! Michelle was honored by the local Crohn's and Colitis Foundation as the Volunteer of the Year at the Champions of Hope Gala. We go over the hope and inspiration we left with, tell you who we met, who was honored, and everything else about the wonderful night! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
www.goodkarmastand.com
https://www.karmatudecandles.com/karmatude-clips
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S4 Episode 11 - Methods to help relax and reduce anxiety at medical appointments and infusions!
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Welcome to S4 episode 11! Mental health is so important for anyone. For IBD patients, they sometimes have more appointments, treatments, and procedures than the average person. A lot of time these situations can create anxiety. Today we go over several methods you can do anywhere, to help relieve and reduce anxiety and stress. Anyone can use these and we hope you find them helpful! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic...
S4 Episode 10 - Thanks to a new initiative, hospitalizations and emergency room visits are 50% down!
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Welcome to S4 episode 10! The Crohn's and Colitis Foundation recently released a news article about their initiative and study that has decreased hospitalizations and emergency room visits. It is all about working together and coming up with early intervention at the clinics. These tools have been tried and tested and are now available to other clinics! Very exciting! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
Article: https://www.crohnscolitisfoundation...
S4 Episode 9 - Navigating the ups and downs of dream granting organizations and IBD kids!
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Welcome to S4 episode 9! Today we discuss what we have noticed, our experiences, and our ideas with organizations that are intended to help chronically ill children. These organizations are phenomenal and we sure would love to see more IBD kiddos be recognized! Most of all, we want you to know your disease isn't invisible, you are a warrior, and we see you! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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S4 Episode 8 - Learn more about differences and similarities between Stelara, Skyrizi, and Tremfya!
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Welcome to S4 episode 8! It is so important to learn more about biologics o we can ask educated questions when we meet with a GI. We have heard about similarities between Tremfya, Stelara, and Skyrizi. Today, we go over all of them to better help you understand the options out there to treat IBD. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
www.goodkarmastand.com
https://www.karmatudecandles.com...
S4 Episode 7 - We offer suggestions and tips on what to bring to an infusion and what to ask for!
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Welcome to S4 episode 7! After 5 years of infusions, we wanted to share our tips and tricks on what to bring, what to ask for, and what to expect at an infusion. Our tips will bring comfort and ideas to make an infusion a little better! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
www.goodkarmastand.com
https://www.karmatudecandles.com/karmatude-clips
Follow us on Instagram @TeamIBDetermined, @TheReggieProject, and...
S4 Episode 6 - Introducing our new patient support program called "Karmatude Clips."
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Welcome to S4 episode 6! There have been so many times we wished we could help infusion patients, newly diagnosed IBD patients (or various other diagnoses!), and also thank blood donors. We think we found a way we can do all those things with Karmatude Clips. These will be donated and 100% free to patients! We can't wait to hear what you think! We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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S4 Episode 5 - We discuss the article that mentions a breakthrough in Crohn's disease complications
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Welcome to S4 episode 5! There was an article that was on social media and had been sent to me by a few friends. We wanted to go further than the headline to see what this article actually meant for those who suffer from IBD. The article was called, "Scientists discover network of cells and and genes involved in Crohn's disease complications." The link to it is: https://www.broadinstitute.org/news/scientists-discover-network-cells-and-genes-involved-crohns-disease-complication-0. Lots of good info as we go over the positives and limitations of the article. We are family friendly and want...
S4 Episode 4 - Using ChatGPT and AI to answer IBD and other medical questions.
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Welcome to S4 episode 4! There has been a lot of talk about using ChatGPT to evaluate lab results, medical pictures and even help diagnose patients. We put it to the test and asked 10 questions about IBD to determine how accurate and helpful ChatGPT and Google AI really are. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
Follow us on Instagram @TeamIBDetermined, @TheReggieProject, and @KarmatudeCandles
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S4 Episode 3 - We discuss the unwanted mental burdens that are placed on IBD patients & caregivers!
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Welcome to S4 episode 3! We have discussed the physical aspects of this disease along with the financial burdens of IBD. Today we go more into the unwanted and unfair mental burdens placed on both the patient and caregivers. Our hope is to show you aren't alone and offer the ways we help navigate the challenges we also face. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics on chronic illness.
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S4 Episode 2 - Mason is graduating 2 years early! How he achieved that goal with his IBD diagnosis!
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Welcome to S4 episode 2! We have had a busy week and wanted to share the good news that Mason is graduating. To be clear (since I am not sure how clear we are in the podcast), Mason was one year ahead in school prior to his Crohn's disease diagnosis. After diagnosis, he gained another year so he ended up graduating two years early. His path isn't for everyone but we hope you find inspiration or validation in your own education journeys! We are family friendly and want our audience to be involved! Listen...
S4 Episode 1 - How Lego therapy helps patients and we share Mason's new Lego MRI scanner!
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Welcome to S4 episode1! After 75 episodes, we have officially entered season 4 of our podcast. It is a very proud moment for both of us and we are so hopeful this podcast is helpful to you. Today we discuss Lego and how they can help with hospital stays, being unwell, and how they are used for therapy. Lego helped Mason through some tough times and continues to do so! We are so excited to share news about how Mason received a Lego MRI machine from the developer over in Denmark. Thank you to Erik...
S3 Episode 21 - We won our appeals for Mason! Let doctors make decisions for their patients!
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Welcome to S3 episode 201! We go over how our appeals went and are happy to share that we won this round. However we know the fight isn't over and we are hoping to testify before congress or share this story. We aren't alone in this and there are so many who are forced to make changes based on what insurance wants, not what the doctor wants. We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some well deserved topics...
S3 Episode 20 - We are asking insurance to end step therapy. Stop demanding a patient fail a treatment!
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Welcome to S3 episode 20! We are facing a treatment change by insurance against Mason's doctor's wishes. It has been a fight with pharmacists, health solutions, and insurance to do what is right and let Mason remain on what is working for him, not what will save money. Our hope is change will happen because step therapy and "try and fail" tactics are heart breaking and so difficult for patients.We are family friendly and want our audience to be involved! Listen together, separately, but ultimately we hope we bring some attention to some...
