Confessions of a YouTube Star, by Rachel Sexton

Ok, ok, “Star” is a dramatic overstatement, but “Confessions of a Lady With a YouTube Channel” just didn’t have the same ring to it. While I may never have the following of the woman who unwraps toys, the kids who make slime, or any other legit YouTube celebrities, I have learned a few things since we launched the VPR POP Talk Channel earlier this year.

  1. You Can’t Measure Impact by Numbers Alone – I’ve spent the better part of the last decade explaining why you can’t look at ROI alone to measure the success of patient-to-patient programming, and our YouTube Channel has been a great reminder to practice what I preach. The number of emails and private messages I’ve received from viewers who want to share their health journeys or talk about what an episode means to them is proof that our reach extends beyond the website’s activity. It makes sense; a brave woman who empathized with the inspiring words of colorectal cancer survivor Lindsay Norris, wasn’t ready to share her story in a public space like YouTube comments (nor would that format have allowed for the robust conversation we enjoyed in a private setting). I now not only know that I can’t gauge the value of our video interviews by numbers alone, I also know that behind each subscriber or “number” there is a very real person who likely has a very powerful story of their own.
  2. You Deserve the Best, and You Can Have It – One thing we’ve heard time and again on VPR POP Talk from people like stage 4 melanoma survivor Rebecca Pendarvis or caregivers Rachel and Ryan Wilson whose infant daughter was diagnosed with neuroblastoma is that you don’t have to be a celebrity – or a millionaire – to get the best care for your condition. Both interviews are powerful examples of people who received a terrifying diagnosis, researched the expert in that field, and picked up the phone to ask them to be their doctor. Was it simple? Absolutely not. There was red tape and tears and months spent far away from home, but these inspiring stories are proof that it is possible and that it is always worth it to advocate for yourself.
  3. The Camera Might Add 10 Pounds… But Who Cares?! – As a Journalism major, one of the things that pushed me from the “broadcast sequence” and my dreams of being the next Diane Sawyer into the “advertising sequence” was seeing myself on camera. Granted, I have the pleasure of working with some of the best lighting and camera people in the business on our VPR Creative Group side, but it wasn’t just knowing that they had my back that gave me the courage to get in front of the camera again. Maybe it was the devil-may-care attitude that comes with middle age (and being 42 and pregnant for most of our filming), but I think the biggest factor in feeling good in my own skin is knowing that it’s not about me. It is such a true honor to help tell the stories of those who have taken a frightening diagnosis – a debilitating stroke, HIV or a child with cerebral palsy – and chosen to not only live an empowered life but to share their stories so that others may also live with hope and purpose. If I could be armed with that knowledge and still worry about how the bags under my eyes looked, well…then I really would have a reason to not be able to look at myself.

I look forward to learning so much more about YouTube as we continue to look to our most valuable resource – the patient – to enlighten us on matters that impact us all. If you have an idea of something you’d like to see featured on the VPR POP Talk Channel, please drop me a line at, or – better yet – subscribe to VPR POP Talk.


Learning to Manage my Thyroid, by Jacquie Hill

The thyroid is a small, butterfly-shaped endocrine gland normally located in the lower front of the neck. Its job is to make thyroid hormones, which are secreted into the blood and then carried to every tissue in the body. Thyroid hormone helps the body use energy, stay warm and keep the brain, heart, muscles and other organs working as they should. That’s a lot of responsibility for something so small. It’s great when everything works like it’s supposed to, but that is frequently not the case, as I’ve learned from personal experience over the past 15 years. Thyroid

I was tested regularly for years and consistently received no indication of a thyroid disorder. Then it happened. A routine test during an annual physical revealed an underactive thyroid gland that was not producing enough of its hormones. In other words, I was experiencing hypothyroidism, a fairly common disorder among people 12 and older, particularly women. The most common symptoms of the condition include fatigue, dry skin, increased sensitivity to cold, memory issues, constipation, depression, weight gain, weakness and slow heart rate.
It’s the opposite of hyperthyroidism, in which the thyroid produces too much of its hormones.

While I was somewhat surprised by the diagnosis, it also explained a lot of things, like why I was so tired while engaging in very little physical activity on a vacation the week before. My physician prescribed levothyroxine, which is commonly used to treat an underactive thyroid, and I soon began to feel better. During the first year on levothyroxine, I had my thyroid levels checked every four months and the results consistently came back normal. We seemed to have the problem successfully under control.

A little more than a year after my hypothyroidism diagnosis, I developed a bad upper respiratory infection that sent me to my physician for treatment. While there, I mentioned it had been about four months since I’d had my thyroid checked and asked if he wanted to check it while I was there. He said he didn’t think it was necessary since all of the tests had come back normal for a year and my thyroid levels seemed to be fine. I recovered from the respiratory infection, but experienced another one a few months later, then another and another. Between July and April, I experienced a total of four serious respiratory infections, which was very unusual for me. During those same months, my skin developed a dull, dry appearance and my hair stylist commented that my hair felt different than usual.

When my thyroid was finally checked during a routine physical exam, I discovered it had completely gone off the rails! Suddenly, the skin and hair issues made sense. And while I don’t know if my thyroid levels specifically contributed to the illnesses I experienced, I can’t discount it as a possibility. My levothyroxine dosage was increased and we went back to regularly monitoring my thyroid levels while working to determine the proper dosage. It was not easy this time, but instead an exhausting process of trial and error. My physician even tried switching me to another medication but the results were not good and I began taking levothyroxine again. Finally, we landed on a dosage that seemed to work for me and yielded normal test results.

In the years since, my levothyroxine dosage has had to be increased a few more times and my thyroid now seems to be in a good place. But my past experiences have taught me never to take the workings of that little butterfly-shaped gland for granted and assume that my medication is doing what it’s supposed to do. Now I proactively share any concerns I have with my physician so we can work together to keep my thyroid levels where they should be.

How Dennis Miller (yes, THAT Dennis Miller) Shaped Our Training Philosophy, by Rachel Sexton

Earlier this month, we were honored to host the patient speakers from our multiple myeloma program in Kansas City for an annual training. Between the educational breakouts and the wonderful pauses to enjoy one another’s company, these events are always a whirlwind of excitement, activity and camaraderie. As we celebrated a great couple of days together and said our farewells, I was reminded of the words of comedian Dennis Miller after he worked on a VPR project, “Going to a meeting and getting all pumped up is like going to the hairdresser: once you get home, you can never quite get the same results on your own.” Leave it to a Saturday Night Live legend to so wittily capture the challenge of continuing momentum after a big event. For VPR Creative Group, that challenge means keeping a sales force motivated after the high of a product launch; for VPR Patient Outreach Program (VPR POP), it’s about keeping patients enthusiastic and ready to present after they leave an annual training summit.
Fortunately, although we don’t have any professional comedians on our Training Team, we do have a diverse and talented group of experts including Emmy award-winning journalist, Lisa Holbrook-White, who joined us this month. So just how does this team of writers and presentation coaches keep our “POP stars” at the top of their game between annual meetings?

  • Video Calls – Our team is the first to admit that nothing is a perfect substitute for in-person communication, but jumping on a Zoom or Skype call is a close second. It’s not unusual for a trainer to pop into my office, laptop in hand, so that I can say hello over the computer as they take a patient speaker on “a tour” of our headquarters. And while there are barriers like technology (your call is only as good as your high-speed connection), there’s also something to be said for the ease that comes from working on a script with your trainer from the comfort of your own living room.
  • Group Webinars – With five kids at home, I’m used to people talking over one another, but it can send a group webinar into a downward spiral quickly. To avoid the chaos of too many people talking at once, our training team limits speakers on a group webinar, and asks participants to type their questions and comments. We have a moderator on hand to field those questions or open the line to someone who wants to talk. This is a great tool when we have a global update like Adverse Event training or when we offer an “enrichment training” where we bring in an expert in an unrelated field (e.g., chair exercises, nutrition trends) that contributes to overall wellness.
  • Snail Mail – Yes, the good old USPS is still a big part of building momentum for us. We truly feel that each of our speakers is a member of the VPR POP family and we treat them like we would our favorite cousin. From birthday cards to National Caregivers Day, we acknowledge individual milestones and celebrate special events.
  • Social Media – The “X” factor at any live training event is the same thing that makes patient-to-patient programming so successful in and of itself: people with similar stories empowering each other. We keep this going throughout the year with private social media spaces where speakers and VPR POP staff can catch up with one another and share their adventures from the road.

While it’s frustratingly true that I’ve never been able to blow out my hair as well as my stylist can, by using a high tech/high touch combo, we are very much able to replicate and build upon the enthusiasm and momentum that begins at a training summit.
To learn more about our training tactics, I welcome your call at 816-756-5999 or

The Mindset of Adoption, by Victoria Gunbatar

Hold up. Before you think, “Ugh, another sappy adoption story,” give me 20 seconds. True, we typically associate “adoption” with images of people who take in children not born to them. (And, yes, we sometimes get a bit sappy about it.) But, one can adopt a host of things nowadays – from a pet to an exercise plan and from political opinions to cultural practices. You can adopt an alternative lifestyle, a life-changing diet, or a philosophy of life. Heck, you can even adopt a highway! So, why do we use this word “adopt” for an array of seemingly unrelated endeavors? Because they DO have something in common. In fact, lots of things. No matter who you are or what you do, chances are you’ve “adopted” something (or should).

VictoriaIn January 2005, I stood before officials at the U.S. Consulate in Guangzhou, China, raised my right hand, and made a pledge that would forever change me. I vowed to love and care for the bundle in my arms as if she were my own flesh and blood. I crossed a line. Not just legally or financially, but – deeper yet – emotionally, philosophically, and relationally. I had adopted a child, yes, but the mindset which initiated that act (and would continue to evolve from the repercussions of it) was, perhaps, a more monumental adoption.

I believe there are key processes that occurred with the adoption of my daughter that are similar to the paradigm shift that takes place anytime you try to embrace something outside yourself. This doesn’t mean adopting a human life can be equalized, for example, with taking on your best friend’s boho fashion style, but there is, I think, a core kinship. To wrap my brain around this, I made a list of four fundamental consistencies of adoptive acts:

  • Adoption isn’t just an “act”; it’s a mindful intent to change something about your life. In fact, the word originates from the Old French “adoptare,” meaning “to choose for oneself.” You’ve got to be all in because, with true adoption, there’s no turning back. If you bring home a puppy from the animal shelter only to return it two months later when you move, you never fully realized the adoptive transformation that would have made the puppy integral to your life, despite fluctuations in external circumstances. It’s not easy to admit that there were many times after bringing my daughter home that I agonized because she wouldn’t bond with me. “What have I done? This is too hard,” I lamented. Then I would remember my three biological kids. It wasn’t always unbridled bliss with them either – no one said parenting was easy!
  • Adoption doesn’t happen overnight. It’s a deliberative process of day-to-day choices that culminates in something markedly unlike the past. As a Trainer at VPR POP, I have the privilege of working with patient ambassadors who, in response to living with chronic illness, have chosen to adopt a mindset of self-advocacy. Their stories inspire me because they have determined to live empowered lives within the constraints of a diagnosis they definitely did not elect to receive. Similarly, every day with my daughter involves an intentional choice to love, to learn, and to listen to the voice within that urges me forward no matter how difficult it can be.
  • Adoption changes you in ways you can’t anticipate, and it’s important to accept that you won’t be the same. Your relationships may be altered. You will be stretched in new ways . . . but it may lead you to a better version of yourself. Earlier this year, I attended a lecture on the practice of minimalism. This was a type of adoption with potential to radically modify how a person eats, dresses, and furnishes his/her home. The speaker had attendees sign up to be part of an e-community where they could network for accountability and encouragement. (While the concept was appealing, I concluded that, with four kids and the tubs of mementos in my basement that accompany them, I maybe didn’t qualify.) The point is, adoption can be pervasive, impacting multiple areas of your life. It’s crucial to embark on the journey with a heart ready to receive unexpected struggles and pleasant surprises alike. I am a different person now than I was before adopting my daughter. It has demanded sacrifice and self-restraint, but it has also rendered a deep resolve and contentment that I could never have known without choosing her.
  • Adoption pulls you along a wave of emotions – from shock, to surrender, to serenity – no matter what type of adoption you’re dealing with. On a difficult day, you might say, “What on earth was I thinking?” only to wonder the next morning, “Why didn’t I think of this sooner?” Case in point: you decide to adopt a fitness plan for better health, but when the honeymoon phase wears off, your gym is suddenly a dungeon. Then comes the emotional battle of pushing through the slump to a more vibrant you! Before I ever saw my daughter, I chose the name Serena – Latin for “calm, tranquil, and serene.” (By the fourth child, a mama can dream.) Well, guess what? Total misnomer! My girl turned out to be loud, strong-willed, and extremely active. I was disillusioned when she didn’t meet my expectations, but I slowly surrendered to her, not my version of her. Eventually, I even came to appreciate the upside of her personality traits: yes, she can be loud, but she speaks up for herself. Granted, she possesses an iron will but name a natural born leader who doesn’t? It’s OK if you don’t immediately see whatever you’ve adopted as kismet. You might experience frustration, remorse, anger, or even resentment. Just don’t be surprised if, one day, initial regret has remarkably become eternal gratitude. It’s all part of the mindset of adoption.

Testing Out the Fitness Trends, by Kristen Schmidt

Earlier this year, we were thrilled with the arrival of baby #3. I’m counting my lucky stars that she is by far my most cooperative baby – she sleeps well, is easy-going and even with daycare and two germy older siblings, she has yet to get sick. So while our transition to three has been better than we could have hoped, this third pregnancy was not so cooperative on my body. It’s been difficult to shed the last 10 pounds, my energy level is low and I need to do some serious core strengthening after my abdominal muscles have been stretched for the third time. I’ve been needing some motivation to jumpstart an exercise routine, so I decided to test out some of the newer fitness classes to see what could work for me.

As with most “new” moms, it can be challenging to find time to squeeze in a workout and intimidating to try something new. Will they notice I can barely touch my toes? Am I going to feel like I have to come with a full face of makeup (because that’s definitely not going to happen!)? Is it too advanced for a beginner? I know if I’m going to stick with a class, it has to be fun, yet challenging, convenient, and not break the bank or my now wider hips. With that in mind, I tried out the classes below and graded each on the following criteria: cost, time, ease of scheduling, intimidation factor, and workout intensity.

PureBarrePure Barre: Barre combines small Pilates and ballet-type movements to build lean muscle without bulk. It enhances flexibility while improving balance. There are over 400 locations nationwide.

  • Cost: C – each class is $22 and a month unlimited is $199 – while they offer one other cardio type class, that’s a lot for such a limited offering
  • Time: A – each class is 50 minutes, which I felt was enough time to get a good workout but didn’t eat up too much of my day
  • Ease of Scheduling: A – online scheduling and multiple offerings throughout the week and weekends
  • Intimidation Factor: C – the instructors are fantastic but some of the stretches were intimidating for a beginner (i.e. the split stretch)
  • Workout Intensity: B – I loved that I left without being sweaty but was really sore the next day. It definitely targets your core, which is exactly what I’m looking for in a class. With that said, I still feel like would need to add cardio into my routine for a well-rounded fitness regimen

TitleBoxingTitle Boxing: Interval training that includes stretching; calisthenics (lunges, squats, the dreaded burpees, etc.); and punching or kicking a 100 lb. bag. There are 180 locations nationwide.

  • Cost: B – the first class is free; subsequent options include: $24 per class; 12-month membership commitment – $109 per month for unlimited classes; month to month – $129 per month for unlimited classes
  • Time: A – while I took the 60-minute class, which felt a little long, they also offer 30, 45, and 75-minute options. Godspeed to those that take the 75-minute class!
  • Ease of Scheduling: A – online scheduling and multiple offerings throughout the week and weekends
  • Intimidation Factor: B – there is a learning curve with the different punches (uppercut, jab, etc.) and I think it would take a few classes to feel comfortable with the language and keep up with the pace
  • Workout Intensity: A – while this is definitely a total body workout, it focuses the most on arms and core. My heart rate was elevated throughout the entire class and I was ridiculously sore the next few days. This was a great workout.

OrangeTheoryOrange Theory: Sessions are split into intervals of cardiovascular and strength training. You wear a heart rate monitor to track intensity and maximize metabolic burn. Cardiovascular work includes treadmill and rowing; strength training includes dumbbell work, planks, TRX suspension trainers, etc. There are over 800 locations nationwide.

  • Cost: B – the first class is free; subsequent options include: $28 a session, $99 for 8 classes p/month; or $159 for unlimited classes
  • Time: B – each class is an hour – this felt REALLY long, especially since it is an intense hour
  • Ease of Scheduling: A – online scheduling and multiple offerings throughout the week and weekends
  • Intimidation Factor: A – this class was HARD, but the instructor did a great job explaining everything in advance. You also control the intensity of your workout and there was a wide range of participants. Some were in fantastic shape and sprinted on the treadmill, while others were power-walking
  • Workout Intensity: A – this was a total body workout and I felt like Jell-O when I left. I loved how my heart rate was monitored and shown throughout the class; it forced me to push myself harder than I normally would, and I left knowing I had a great workout. They email your results to you as well so you can track your progress.

ExerciseCoachThe Exercise Coach:  The concept is a 20-minute workout just two times a week. They use computerized machines that calibrate your body’s needs. A trainer can watch your workout or analyze it later, noting exactly where you’re maxing out or you’ve hit a plateau, and intensify, soften, or modify your workout accordingly. There are 43 locations nationwide.

  • Cost: D – the first two classes are free; subsequent options range from $259-$335 a month, depending on the length of commitment, which covers 2 personal training session p/week. This seems REALLY high, even with the one-on-one interaction
  • Time: B – the session only lasts 20 minutes, which makes it very easy to fit into your schedule; however, I didn’t feel like 20 minutes was enough time for a full workout, especially only going twice a week
  • Ease of Scheduling: A – online scheduling and multiple offerings throughout the week and weekends
  • Intimidation Factor: B – the trainer had a science background and brought me in for a consultation before the workout – he used language I wasn’t familiar with, which didn’t create a great initial connection. The gym is small and it looks like they only have a couple of sessions going at once, so it is quiet and calm
  • Workout Intensity: C – I pushed myself on each machine, but I still felt like I had more left in the tank at the end of the session

The winner: Orange Theory Fitness and Pure Barre On Demand

In my opinion, Orange Theory Fitness provided the best workout and value for money. I’m continuing to complete drop-in classes at Orange Theory and would consider a membership in the future once I know I can commit to going at least twice a week. I’ve also found Pure Barre online classes. I love this option because it costs less and I can take the classes at any time from home. It follows the same format as the studio classes but there are options for the length of class – from as little as 5 minutes up to 60. This has been a great addition to my workouts and I can’t use the time excuse. Now if I can only address that ice cream habit!

A Look Back, by Rachel Sexton

In May, I celebrated twenty years with VPR. As I reflected on how fortunate I was to find a company that would challenge me and grow with me (I never imagined I would commemorate two decades at VPR and the birth of our fifth child on the same date!), I also spent some time marveling at how much our company has evolved in that time.

In 1998, our sole focus was VPR Creative Group: developing product launches, creating marketing campaigns and producing videos, primarily for the healthcare and pharmaceutical industries. My first launch, as a writer and producer, was for Allegra-D and included a rousing performance by a championship cheer squad and a demonstration from an Olympic table tennis star. As we worked with the Allegra marketing team in the years to come, a video interview with IRL race car driver Robbie Buhl (filmed in his crew’s Indianapolis garage) put into perspective the severity of what is often written off as the minor annoyance of seasonal allergies: in the time it took to close his eyes and sneeze, his car could travel halfway around a race track.

Robbie is far from the only celebrity we’ve had the pleasure of working with at VPR Creative Group. I never thought I’d be spending an evening at Kevin Costner’s home in Santa Barbara as we talked about the importance of raising awareness around deep vein thrombosis (DVT)… and neither did our client. The owner of VPR, Curtis Pickering, was actually doing creative work on an architectural project with Kevin when he got lost driving from the Costner estate back to his hotel. This was 2005 – GPS dark ages – so he pulled into a fire station to ask for assistance. The firefighters told Curtis what a great guy Kevin was and that he had recently visited the station to bring them a gift. Curtis mentioned this the next day when he saw Kevin, who said, “Well, those guys saved my life! I almost died from a DVT. You’ve probably never heard of it…” In fact, Curtis – and the entire VPR team – was well versed on the potentially lethal blood clots since one of our clients was an anticoagulant to prevent DVT. Over a beer and a handshake, Curtis convinced Kevin of the importance of sharing his story, and just a few months later, we were directing a video of the Academy Award-winning Director sharing his powerful story.

kevin costnerWhile there have been plenty of those “pinch me” moments over the years, the people who have made the most profound impression on me don’t have an agent or walk the red carpet. They are people like you and me who face the challenge of a frightening diagnosis and leave others inspired by their journey. Those people not only make me want to work harder and do better, they are at the beginning and end of everything we do at VPR Patient Outreach Program (VPR POP), the branch we started in 2010.

When we were approached that year and asked to participate in an RFP for a patient program, we told the prospective client that they were crazy; we were their creative boutique, their launch source…we didn’t develop patient programs. Our very insightful, soon-to-be client acknowledged that while we hadn’t yet developed a patient program, no one was better than VPR at sharing the voice of the patient – the Robbies and Kevins and so many others who weren’t household names but whose healthcare journeys were equally deserving of the spotlight. Eight years and 27,000 patient programs later, we have to agree with the old adage that the customer is always right!

Today, we enjoy the best of both worlds – offering full-service creative, production, launch development, marketing and even texting networks through VPR Creative Group; and recruiting, training and developing patient programs on the VPR POP side.
Twenty years ago, as I graduated from the University of Missouri, I may have not been entirely shocked to think that my shiny Bachelor of Journalism degree would give me access to an Indy car garage or land me an interview with a Hollywood legend, but I could have never dreamed that I’d be honored to play a role in helping others to live well with progressive and rare diseases. And that is not only what makes every day of the last 20 years more than worth it, it’s what makes thinking about the next 20 years so very exciting.

To learn more about what we do at VPR Creative Group and VPR Patient Outreach Program, please call me at 816-756-5999 or email me at

Mindful Eating: Making Peace with Food, by Deb Schaefer

Recently, I shared a blog about skincare and how important it is to spend just a little time pampering our outer shells for that healthy glow as you age. Today I’d like to address the importance of mindful eating or what we put inside our bodies that makes a difference in how we look, how we feel and most of all, how our whole body reacts to the choices we make.

Many of us were raised to believe that three square meals a day are the norm. But are you really always hungry – or only hungry – in the morning, at noon or after five o’clock in the evening? If no two of us are alike, why do we collectively fuel our bodies at the same times throughout the day? Let’s look at what mindful eating can do for you to possibly help improve how we feel and maybe even how we look.

Simply put, mindful eating is learning to pay attention. Rather than putting food into your mouth unconsciously, you learn to exercise your senses so you can make choices that support health and well-being. For example, do you always eat because you’re hungry? Think about this for a minute. Many of us eat out of boredom, anxiety, stress or simply because the clock tells us it’s meal time. This is what I like to call an unconscious action – doing it out of habit. Instead, listen to your body; it will let you know when it needs to be refueled. And when that time comes, be mindful of what you choose to fill the tank.

I found the following tips to be helpful when making better food choices: Picture1

  • Learn to recognize physical hunger cues, instead of non-hunger triggers (such as boredom or stress) – eat with purpose.
  • Be aware of the effects that certain food choices may have on your emotions or even the after-effects on your figure.
  • Eat slowly (preferably with no distractions) and only until you’re full.
  • Pay attention to what you’re eating (sure, it’s easier to grab a few cookies for a quick fix, but your body may be asking for the proper fuel that comes from taking the time to prep a spinach salad with protein).

For roughly the first 54 years of my life, I ate what I wanted, when I wanted. I didn’t pay too much attention to the why, when or what. I just ate…because, why not? However, over the last year or so I noticed that I could no longer tolerate certain foods that I had been enjoying all my life. Outside of some weight gain, which in itself is depressing, I also noticed changes in my skin, hair and even my bathroom habits. There was no question in my mind – my eating habits and food choices needed to change. For me, being mindful of the when and what has proven to make a tremendous difference.

Below are some guidelines that work best for me:

  • Concentrate on shopping the perimeter of the grocery store – incorporating more fresh fruits, veggies and fresh deli meats or fish.
  • Schedule ample time to read product labels when grocery shopping – focusing on higher protein and lower carb items.
  • Keep a food diary – write down everything you eat for one week and be sure to note how you feel (more energy, tired, sick, full, hungry, etc.). The not-so-good items will jump out on the page – trust me!
  • When it’s time to eat, put down your phone, turn off the television and walk away from your computer. Use this time for concentrating on the task at hand – eating.
  • Respect and appreciate the meal – sit down, relax, eat slowly and savor the flavor.

It didn’t take an enormous amount of time for me to see results. I have more energy (if that’s even possible) and no longer see food as a crutch for my emotions or stress level. I even lost a little weight! Now, don’t misunderstand me, I haven’t completely given up on pasta, pizza or even a piece of chocolate cake. But, I am making every effort to limit how often I consume these guilty pleasures because I know as much as I enjoy the taste, it’s rarely worth sacrificing how they make me feel.

Learning to transform your relationship with food isn’t easy. Our autopilot sways us in the same direction repeatedly – the mindlessness road. Being present for every moment will help break the not-so-healthy habitual patterns. Make peace with your food and take the mindfulness path to a healthier YOU.

What’s Our “Why”? by Rachel Sexton

I will never forget sitting in an Italian restaurant for dinner, surrounded by multiple myeloma survivors, as we prepared to launch a patient-to-patient speaker program in that area. Our team had been researching this rare blood cancer for weeks in preparation for this meeting, so when the gentleman next to me said, “I haven’t had one bad day since my autologous stem cell transplant,” I was stunned. Everything I had learned about the process described the “first 100 days” after transplant as being an often grueling and critical period. In an incredulous voice, I replied, “Really? You didn’t have any challenges during the first 100 days?” He immediately replied, “Oh, sure – some days have been much better than others, but any day I’m alive can’t be a bad day.”

It’s been more than 5 years, but I can still smell the marinara sauce and recall every detail of that conversation when someone asks me ‘why’ I chose this career. That inspiring perspective is something we see across all our peer programs – from diabetes to rare disease – and it’s what motivates every member of the VPR POP team in everything we do. Training Specialist Jordan Sexton sums it up when he says, “I consider working closely with people who have chosen to respond to some of the most difficult aspects of their lives by sharing their experiences, to be a genuine privilege. The courage and dedication they show in helping others inspires me daily, and I feel fortunate I am able to help them share their knowledge with those who are in need of it most.”

For some of our team, pursuing a role in patient-to-patient education was personal. Director of Program Coordination, Traci Rogers, shares, “I was drawn to peer mentoring because of my Aunt Rosalie. Rosalie took a prominent role in my life following the death of my mother when I was 8. Rosalie was diagnosed with diabetes in a small town that followed the antiquated approach to ‘just take a pill and avoid sugar’. Insulin was a punishment for not losing weight or eating differently. Had she had access to a program like those we have created for diabetes, she might have better understood the importance of blood sugar control and that insulin may have helped her avoid complications.”

The seed for Training Specialist Victoria Gunbatar’s ‘why’ was planted more than 15-years ago and half a world away. “In 2003, I volunteered at a Chinese orphanage where I met a frail little girl who stole my heart and jumpstarted my adoption journey. I relentlessly raised money for her medical care and soon learned she had been diagnosed with Moyamoya disease as well as tuberculosis in her brain. I tracked down the world’s leading expert on Moyamoya at Harvard University, who told me not only is Moyamoya rare but, in combination with cerebral TB, it is virtually unheard of in the Western world. Worse yet, he said that, had she been diagnosed and treated earlier, she would likely have had a more positive prognosis. I have never forgotten “Celina” and how getting the right information in the right hands at the right time can forever alter one’s path in this life. I am now very thankful that I get to help tell the stories of people who know first-hand the tremendous impact of patient empowerment.”

From sharing a platter of pasta in Kansas City to bonding with a baby in Asia, the ways we have been touched by patients is as diverse and unique as the patients themselves. Not only have those moments left a permanent imprint on us, they are also what keep us going. Each time we schedule one of the 4,000+ patient-to-patient programs we host each year, it is with the knowledge that for a woman struggling with a cancer diagnosis in Omaha or the parent of a child looking for rare disease resources in Orlando, this program might be their ‘why’…the message that changes their perspective or puts them on a better path. And to paraphrase the words of a wise man, any day that you have the opportunity to be a part of a change like that can’t be a bad day.

“You’re So Skinny!” By Becky Lodes

“You’re so skinny!” Sounds like a compliment, right? But for a teen with body image concerns, it’s most definitely not. There are many types of body image issues that can have a negative impact on someone’s emotions and confidence, and I’m going to share how my family has been affected.

When I hear my 15-year-old daughter, Jordyn, talk about how kids are telling her that she’s skinny, it’s difficult not to respond with, “There are so many girls who would love to hear that!” But she doesn’t love to hear it. And I know that a response like that would be discounting her feelings and the fact that this truly is an issue for her.

IMG_4314I’m not sure how long Jordyn has had body image issues. My husband, Jason, and I noticed a few months back that she was looking online for information about healthy foods, and we thought it was great that she was interested in improving her eating habits. But then we started to see signs that it was about more than just wanting to eat better. At her annual check-up with her pediatrician, Jordyn was more interested than usual in her weight and how it compares to others her age. She started to spend a lot of her free time working out, and I would frequently see her pull out the scale to weigh herself. Then there was the request to buy her a cream that makes your butt bigger (I didn’t even know that was a thing!). When she came home from school crying one day because several friends were commenting on her body shape, we knew what we had started to suspect – Jordyn had issues with how she viewed her body and it was having a serious impact on her.

Our approach to helping Jordyn has been focused on two areas. First, although body shape and size are mainly determined by genetics, we wanted to explore healthy ways for Jordyn to gain a few pounds and considered this from the point of view that this could help her as an athlete. In addition to researching exercises that build muscle, we also learned about healthy ways for a teen athlete to gain weight through diet. She now has two pieces of bread instead of one with her sandwich at lunch. Her backpack is full of snacks she eats throughout the day, including peanut butter and crackers, fruit, and nutrition drinks. Although she’s only gained a few pounds over the last month, she’s pleased to see her efforts are making a difference.

The second, and more important, part of our approach has been on the emotional aspect. Jordyn’s body will most likely never be exactly how she would like it to be – at least at this time in her life – so what can we do to help her have a healthy body image? We know that there isn’t one magic thing we can say that will make her be OK with her body size and shape. But it has helped a lot for me and Jason to accept that this is a problem for Jordyn and to acknowledge how it makes her feel. That’s opened the door to ongoing communication, which we know will be the key in working through this together. And just as important as what we say is what we don’t say – I try not to make any negative comments about my size or shape, and we’ve avoided telling her that she just needs to be happy with how she was made. But at the same time, Jordyn is so much more than how she looks, so although she continues to weigh herself, we focus on her being healthy and strong and having confidence in who she is.

There will always be things that will impact Jordyn’s body image. We can’t control the messages in the media about the perfect body, but we can help her develop tools to she can use when others say something to her about her size and shape. We’ve encouraged her to have discussions with friends, letting them know that their comments hurt her feelings. She’s come to understand that her friends aren’t intentionally trying to hurt her, but just don’t realize that telling her she’s “so skinny” makes her feel bad about herself. Knowing that it’s OK for her to let others know that it’s not OK to talk about her body has been helpful for Jordyn and given her confidence.

I know that many teens have body image issues, but I’ll be honest, I didn’t anticipate that Jordyn would have a problem with it. I’m thankful that Jordyn has been open to acknowledging the problem and sharing it with me and Jason, and we’ve been able to address and work through it as a family.

Storytelling; A Powerful Way to Share Your Ideas, by Rachel Sexton

Our family of patient speakers is as wonderfully diverse as any other large, boisterous family: we have PhDs and high school students; stay-at-home dads and full-time lawyers; newly diagnosed patients and seasoned influencers. Yes, each of our 400 speakers is decidedly unique, but they have far more in common than a diagnosis: they all have an inspiring story to tell.

When introducing ourselves to a new client, “storytelling” isn’t exactly something we lead with. In an industry accustomed to measuring ROI, it can take some time to see how R-O-Y (or John, or Joe, or Mary) can make an impact on your bottom line by simply sharing his personal narrative. But, not only can Roy’s powerful story move his peers to action, it can even have a direct impact on their health.

Scientist and author Paul Zak, PhD researches the neurological effects of narrative. In a recent interview, he shared that listening to a good story triggers a cascade of events in the brain and body that can increase heart rate as the listener’s attention is piqued and cause the brain to secrete oxytocin, which lowers blood pressure and eases gastrointestinal distress (Goldman, L. 2018, February. Tell It Like It Is. O Magazine, volume 19, pp. 67-69).

While storytelling may indeed be a natural remedy, many of our clients have their own therapies – and want us to find those speakers who can tell a motivating story that includes their experience with that therapy – which is why it’s important to also emphasize the emotional benefits that come when peers connect and stories are shared: “90% of patients who heard an inspirational story about another patient said they became more hopeful, which spurred them to take action, such as trying a new treatment, going to a doctor, exercising or eating healthier.” (Robinson, R. 2017, March. Patient Stories. PharmaVOICE).

We see and hear anecdotes that support that statistic every day at VPR POP; in fact, one of the most common things we hear from HCPs who recommend that their patients attend a patient-to-patient program is “I’ve been talking to them about making this change for so long, but it really didn’t sink in until they heard it from a peer.” While there’s no doubt that a peer’s story can make a big difference for someone living with a chronic or progressive disease, not every story is created equal, which is where we come in.

Our training team works with each patient speaker to make sure their story is authentic, impactful and compliant. Here are 3 tips to ensure that a patient story packs a punch and motivates someone to take action:

  1. Editing – it can be so hard to leave any detail on the cutting room floor when you think about your arduous journey of diagnosis, treatment and living with a disease, but you have a finite amount of time to engage the audience and get your message across. It’s often cathartic to start with the full War and Peace version of your story so that you’re sure you’re doing justice to your memories, and then work with a partner on the training team to whittle it down to the most crucial points.
  2. Relatability – the beauty of a peer-to-peer program is in identifying with someone who has been in your shoes. While it may be tempting to draw attention to the things that make you one-in-a-million, it’s best to save the humble brags for social media and keep the focus on the aspects of your life that are more relatable.
  3. Theme – there’s a fine line between a “hook” and “hokey”. It’s important to find a theme that the patient speaker is truly passionate about (a favorite quote or hobby, for example) and use it effectively but sparingly. It should punctuate and personalize the story without cannibalizing the main message.

Speaking of favorite quotes, one of mine is from author Robert McKee who said, “Storytelling is the most powerful way to put ideas into the world today.” To learn more about how storytelling can help get your ideas into the world, call us anytime at 816-756-5999.