Parker is an energetic, blonde haired, little boy. Just like many boys his age in Vermont, Parker enjoys skiing, bike rides, grass-stained jeans, and his new puppy Bailey. During the summer of 2014 this perfectly healthy heart-throb of a boy was crippled with abdominal pain, fatigue, and weight loss. By the end of summer all of these horrible symptoms culminated in a diagnosis of Crohn’s disease at the blissfully innocent age of 7. As his family was coming to grips with life with a chronic incurable illness, Parker’s symptoms got worse. He was quickly admitted to the University of Vermont Medical Center and received his first dose of infusion medications to fight Crohn’s.

“I don't want this for him, there must be a mistake, Parker is my rock” his Mom, Keri remembers thinking. “As a parent you go through the motions and the emotions of a diagnosis. I think the hardest moment for me as a mom, was being strong in front of him, for him, and the family, and then breaking down when I was alone. I remember one moment, late at night in the hospital walking down the hallway of the children's floor, and I stopped. I could barely walk any further. I had to keep telling myself, one step at a time, whatever it takes to move, feeling so isolated and alone, and from that moment on, that has been my motto. One moment at a time, one day at a time, and one step at a time, to just keep moving forward.”

After three long days as an inpatient at the UVM Children’s Hospital, Parker was discharged. He almost literally rode his scooter right out of the hospital. With a huge smile painted on his face, you could almost see the shackles of illness begin to release their grip. The energetic little boy that they knew was coming back to the surface with every giggle that squeaked out of him, and they kept moving forward – one step at a time.

As the ICN Improvement Coordinator here in Vermont, I first met Parker just a few weeks after his diagnosis. He was getting an infusion and I had come to talk with his family about ImproveCareNow. Whenever I approach patients and families about ImproveCareNow, my wish is that they will see this Network as a glimmer of hope in what is most likely a very dark place, and ultimately that they will want to get more involved.

Through the icy grip of winter, Keri and Parker continued coming to the Children’s Hospital every 8 weeks for infusions. During one of these otherwise uneventful visits, Keri asked about becoming more involved with Parker’s care. Although this question is short in length and easily rolls off the tongue, I feel it is one of the most powerful questions a family can ask. That uneventful visit ultimately lead to one of the most engaging and empowering conversations and relationships that either of us had experienced in a long time. Personally, I don’t think either of us could have ever imagined what was waiting just around the corner. It wasn’t what we were expecting but was exactly what we were hoping for, and certainly something we weren’t going to say no too. This project with Keri has evolved over time and has been a huge learning experience for everyone, but we’re going to keep moving forward – together – one step at a time.

I look forward to sharing more with you as our relationship, and indeed our adventure, unfolds.

Recently I shared several characteristics of communities that I believe are a key part of what makes ImproveCareNow more than an improvement Network, but a real community. One of the characteristics is that communities are made up of smaller communities.

In ImproveCareNow there is no shortage of smaller communities. The wonderful thing about some of these is that they have developed organically. For example, if you are a physician, nurse, parent, dietitian, improvement coordinator, or social worker, you are now part of a small but vibrant community that includes others in that same role. Members of these groups help on-board and mentor each other, take on small projects that help the whole Network focus on issues related to IBD care that might be overlooked by other roles, and provide a social support system that helps make each individual’s ImproveCareNow journey just a little bit more inclusive and fun.

Many of these small communities emerged from the interest, motivation, ideas, and leadership of their members. They are now largely self-driven and are even beginning to branch out in inter-community collaborations as a result of a “project pitch” session at our Spring Community Conference. There are also groups of like-minded people who have common interests and want to take on a project together, small committees that form to address a specific issue, and groups of people working together to plan aspects of our webinars and Community Conferences.

Some of our other smaller communities have been developed by design. In ImproveCareNow we talk a lot about our “Learning Labs”, which are small groups of ICN care centers with similar characteristics like size or organizational structure. Learning Labs enable centers to work more closely together to catalyze improvement and—perhaps more importantly—maintain that “small town” feeling that is such an important ingredient in our Network.

Why did we decide it was important to create Learning Labs? Back in 2008, there were eight ICN care centers. Everyone knew one another, all were aware of the projects that other centers were working on, the volume of messages on our listerv was not overwhelming, and our monthly webinars were full of lively, uninhibited conversation. Sharing was easy and the conversations were manageable; I like to say that we didn’t need the “mute” button on our webinars.

But as we grew these conversations became harder to manage; the background noise from many clinical settings was more distracting, the volume of e-mails in which centers shared updates and ideas was becoming frustrating to our participants, and there were more faces and names to remember. As a result, ICN leadership found ourselves doing more talking and the ICN care center teams doing more listening and less teaching and responding. Literally and figuratively, the Network was getting noisy and quiet at the same time. The most concerning side-effect was that big ideas that needed to be shared were getting drowned out by the noise—from a nurse who didn’t want to speak up on a large conference call to a parent partner who had a great idea but was concerned about putting it out there for the whole Network to see. It became challenging to maintain our ability to collaborate and share seamlessly. So we decided to try breaking out into smaller groups – much like we do during our Community Conferences – to increase our capacity for active and meaningful participation.

And so the ImproveCareNow Learning Labs were born.

Today we have seven Learning Labs. Each lab is guided by an assigned quality improvement coach and meets via webinar every other month to share lessons learned from quality improvement projects, share and discuss their center-specific data and outcomes, and develop ideas for collaboration. The labs spend time working together and sharing their progress at our Community Conferences; and they review written summaries of the best quality improvement ideas and barriers taking place within their Learning Lab on a regular basis so they can identify ways to accelerate their progress as a group.

We apply quality improvement principles to everything we do in ImproveCareNow, including testing changes and observing the results to determine whether they result in an improvement. The same is true for our Learning Lab model. What have we observed about the Learning Labs so far? We have seen stronger relationships form in these groups and have seen centers that would not previously have collaborated share ideas and launch projects together. We have seen nurses, improvement coordinators, and patient and parent partners speak up and teach on Learning Lab calls in ways they were not previously comfortable doing. The Learning Labs have also helped our leadership team achieve some key community-building goals:

The Learning Labs have become a fun and meaningful part of the ImproveCareNow journey. But there is so much more to learn about their impact on our centers, our Network outcomes, and on the participant experience. And knowing this community, they will look very different two years from now than they do today!

I am hoping that readers from our ImproveCareNow centers will share their experience with being in Learning Labs in the comments section below. How have they enhanced your experience? How would you change them for the better?

I am writing this having just returned from several whirlwind days in Chicago at the first ever ImproveCareNow Community Conference. The ImproveCareNow Network has come together in person twice a year for seven years, but this was the first time this gathering was not called a Learning Session—the traditional Quality Improvement Collaborative term for in-person meetings. We changed the name for several reasons, the most important being that ImproveCareNow is now indeed a community. Here are some reasons why:

We have each of these things in ImproveCareNow and in future LOOP posts I will share examples of each. But one that I didn’t list,which became very clear to me at the conference, is that the best communities take risks together. I want to share a bit more about that here.

One of our conference goals was to brainstorm new interventions—in QI-speak, “changes to test,” - that will help us get even more kids with Crohn's disease and ulcerative colitis into remission. Prior to the conference, we developed a new list of key drivers—or focus areas—that we thought were most important to improvement. Now it was time to crowd-source the best ideas for interventions to tackle in each area. This tends to be the most fun part of the process!The ImproveCareNow Network has developed interventions together before. But this time, we wanted to make sure our incredible diversity and stakeholder engagement was really reflected in these new interventions. In the weeks leading up to the conference, each center interviewed patients and parents to get input on challenges and opportunities in each Key Driver area. In doing so, they opened themselves up to a variety of feedback; I know this felt risky to some centers.

But as a community we took the risk together. Prior to the conference, nearly all of our 254 participants chose the three Key Drivers that most interested them. Once we received their choices, we put together small groups (6-9 people) that were as diverse as possible-blending people from different centers and with most groups including at least one patient, one parent, and others from several clinical roles. Planning this felt risky even as it felt like the right thing to do. Would people want to spend almost two hours of valuable conference time in an informal exercise with people outside of their peer groups? Would lone parents and patient at the tables feel overwhelmed, ignored, or vulnerable? Would conversations stall with the minutes ticking by slowly?

It ended up being a risk well worth taking. Between 2:00 pm and 4:30 pm on Saturday the low, quiet, steady buzz of conversation eased all of my concerns about people diving in and learning with those very different from themselves. Many observers noted that as  groups tackled the provided questions, the first thing they did was turn to the parent or patient at the table—deferring to their expertise. When each of the three 40-minute discussion periods ended, we worked harder than expected to get each group to wrap up and move to their next tables. And the notes that were shared—and will guide our work in the months and years ahead—are full of some of the richest, most diverse insights I’ve seen in my quality improvement career.

We work hard to make sure all participants in this community have the quality improvement structure, skills, and tools to achieve their goals. Even more important is making sure the right centers and people connect so they can do more together than alone. We foster this online on our ICN Exchange knowledge commons, on monthly webinars, and at our Community Conferences. Admittedly, this gets a bit more challenging as we grow and we don’t always get it right. But what these collaboration sessions showed me is that community members desperately want to keep connecting across roles and centers and that they embrace the expertise of everyone at the table. They are building their own momentum and will continue to do so even as we get bigger and push our network infrastructure to keep up. So thank you to the ImproveCareNow community for taking risks together, leaving roles and titles aside, and creating a better today and tomorrow for and with kids with IBD.

[Editor's note: This update was shared by engagement team member Elizabeth Monti Sullivan]

Having the opportunity to represent ImproveCareNow at the recent Cincinnati Children’s Hospital Medical Center IBD Education Day gave me a firsthand view of the challenges and opportunities associated with communicating about our Network. While my ImproveCareNow Engagement and Leadership campaign team partners and I had a plan for our time at the information fair, we learned that you can never come too prepared to tell the story of this dynamic community!

We learned that building awareness and pitching involvement in ImproveCareNow to potential partners can be challenging at first, even for those of us who know a lot about the Network. And if we struggle with telling the ICN story, it must be even more challenging for our colleagues in the Network's 70+ care centers. How well can they explain ICN and its objectives? Are we sending a clear and consistent message? And why can it be so tricky to give a clear picture of ICN?

We know that ImproveCareNow is an intricate web of people, activities, and platforms. We are staff & leaders, volunteers, families, patients, sponsors, partners, clinicians, and researchers. We are many people working on many projects. You might find us talking about social media platforms and forums, quality improvement, awareness campaigns, research studies, work groups, goals and metrics, and many other things. With all of this constant activity taking place, how can we be sure we are effectively articulating who we are in ways that resonate with all of our partners?

Here is where I like to start: What we know is that ImproveCareNow centers have together increased the remission rate for registered kids with IBD from 55% to nearly 80% without using new medications. Their success is rooted in the application of quality improvement methodologies, seamless sharing of lessons learned, and a relentless focus on data that tell the story of the patients’ disease course. We know that we want to elevate and even more closely incorporate patient and family voices into the process of improving care. We are bringing together many people who focus on many different things, but all our activities share one common goal: we want to continue to be the cure for waiting for the cure. We want to outsmart IBD together!

We have heard the voices of parents and patients who see the value of collaborative improvement and are pushing us further, faster as we pursue this goal together.

Tell us what ICN means to you and how you want to be involved.

ICN Engagement Campaign

Recently, ImproveCareNow has been training participating care centers to develop and empower leaders at the center level. With this training, ImproveCareNow will have an opportunity to deepen its impact and extend its reach by focusing on equipping the whole community with the skills, knowledge and tools they need to take ownership of ImproveCareNow’s work at the local level. We are happy to announce that the first round of centers have almost completed a five-module training series and that we are about to begin rolling out training to the next group of centers!

If you're a parent, you know. You know what you'd do for your kids. If your child is diagnosed with a chronic illness, you discover that you'd do even more.  Until a cure is found, part of what you'll have to do is work closely with your child's doctor and care team. This can be hard and intimidating but everyone knows the best care comes from everyone partnering together – communicating honestly, sharing the work, pushing each other towards the goal.

Have you seen our health care system? It doesn't always work that way. But imagine if every interaction with your child's care team felt exactly like that – like you were part of the best team in the world. And your team had access to knowledge and wisdom from other best teams in the world. World class teams networked together to make things better for your child and all kids who suffer? That's what ICN is building. And you know what's even better? Having the opportunity to work with ICN to make this happen. That's why I'm part of ICN – we're the cure for waiting for the cure.

What does an engagement campaign have to do with a healthcare quality improvement network? ImproveCareNow leaders were wondering the exact same thing before we began learning from our friends at 270 Strategies (experts in both political and issue campaigns!) Their team is teaching us how to apply successful campaign strategies to engage a large and diverse community of people in helping kids with IBD get better, now. Quite simply, ImproveCareNow invites clinicians, parents, patients, researchers, and others to learn about our work and to lend their time, talents, and expertise so together we can learn and find innovative new ways to outsmart IBD. And right now we’re learning how to make it easy for everyone to connect with ImproveCareNow in the ways that work best for them and ensure we can harness and value each person’s unique and generous contributions - making it meaningful and rewarding to be a part of our community.

In ImproveCareNow we always start with a small test. To that end six of our centers are diving in as campaign pilot centers. Cincinnati Children’s Hospital Medical Center, Children’s Mercy Hospital, Children’s Hospital of the King’s Daughters, Children’s Hospital of Philadelphia, Levine Children’s Hospital, and the University of Michigan CS Mott Children’s Hospital are getting some training, rolling up their sleeves, and re-framing what an ICN IBD team looks and feels like. You will hear more about their journeys in the coming months as they build momentum and start sharing what they have learned with the rest of the community. In the meantime, we wanted to highlight some of the work underway in the early days of the campaign so that you can begin to learn with us now:

Snowflakes and ImproveCareNow

Campaign pilot centers are beginning to reframe their ICN teams with the “snowflake model” in mind. The snowflake model is a way of organizing people that decentralizes leadership and increases two-way communication. Basically it makes it easier for everyone to share the work and contribute to the success. These centers have found that creating a snowflake does not necessarily mean more work for the existing team, rather, it often involves reassigning people in ways that make it easier to get existing work done more efficiently.

“Hard ask?” – that sounds hard!

As part of their training, the participating centers are learning that it’s OK to be really direct about what they need from potential partners. It is lot easier to say no when the ask is soft and non-specific. So rather than saying “Umm…I was thinking maybe you could help us out somehow in the next few months,” they are looking for ways to be very concrete when asking for help, “Please come to our QI meeting next Tuesday. We really need your input on our new diagnosis process.”

Everyone’s story matters, and is important, and can change someone else's story.

More than ever, we are seeing how stories are key to helping potential partners understand what ImproveCareNow is all about and how they can fill important gaps in the community. Our Spring Community Conference is just around the corner and we are seeing some inspiring stories as part of the pre-work, stories that make very clear just how much our Network attracts those who want to join in and become a part of our success.

What this means to patients and families.

We know that growing our community will only make us stronger…indeed, the theme of our Spring Community Conference is “Strength in Our Numbers”! In her beautifully written LOOP post ‘Breaking a Promise’ Sami Kennedy really drove this point home. She reminded us why being part of ImproveCareNow is important and empowering for individuals, just as it is important to the whole community. As she says, “I have been welcomed into an environment where I am encouraged to not only sit at the table, but also to stand up and address the whole room.”

Meanwhile, we still have a lot to learn.

As the campaign unfolds, the ImproveCareNow leadership team knows it has an enormous responsibility to continue to ensure the network’s success, and to help develop a system that offers tools and opportunities for co-producing health and real partnerships. And we will be the first to admit, we have a lot to learn! We need your input as we go. We want to have open, transparent discussions about the challenges and opportunities ahead so we hope to engage more of you on twitter and other social media venues to take part in an ongoing dialogue between Community Conferences and webinars. You can follow @myers3411, @michaelseid11, @PeterAMargolis, and @improvecarenow on twitter and weigh in with your feedback and concerns as we build a bigger, better community together.

One of the most challenging things about my job as Communications Manager for ImproveCareNow is trying to take a Network that is as vast, as diverse, as groundbreaking as ImproveCareNow, and distill it down into a single clear message that means something...to Paul Patient, to Prudence Parent, to Carrick Clinician, to Igor Industry, to Harold Healthcare. I think about this a lot. I talk about it with my colleagues. My husband actually asked me to stop talking about it with him.

One day I found myself talking about it with one of the fabulous parent partners who volunteers her time and brilliance to help ImproveCareNow transform care, health and costs for all kids with Crohn's disease and ulcerative colitis - and she highlighted for me how I'm failing at my job. Yup. I already knew that.

But, guess what, she let me know that she's struggling too. She's tried many times to explain what ImproveCareNow is, and what we do, and each time has been met with a "huh?".  Actually, it's not the first time I've heard this story. I think many of us have tried to explain what ImproveCareNow is and been met with "huh?", because we're trying to squeeze the WHOLE story in. I get it. There is so much great work going on in ImproveCareNow; it's irresistible to try and cover it all.



But, let's go back to failure for a moment. In our network we know failure is really just opportunity in disguise. An opportunity to learn something new, to change the way we approach something, to make an improvement.

So, on that note, I've been thinking about opportunities to Improve Communications Now. And I've decided it is not my job. Wait, did I just fire myself?! No. It's not my job because, like so much of what we do in ImproveCareNow, I can't do it alone. It is going to take a village.

And and then occurred to me. The village exists! There's Steve from the Research Committee. Melida from the ICN Exchange. Sarah M. from the Quality Improvement & Executive Leadership teams. Jamie from the Parent Working group. Jennie & Sami and all the PACers from the Patient Advisory Council. There's Noel from the Psychologist/Social Worker group. Michael who is a psychologist, researcher and a parent as well. And more. And they are all here on LOOP.

Ok, so we've got the village. Where do we go from here? Well, I think we should expand the village. Bring more storytellers into mix. In fact, I think you should consider being one of those storytellers. How will you begin? A great way to start is by asking yourself "what is my ICN story?" Write it down. And send it to me.

As for me, I'll just sit back and let you do all the work. I'm just kidding! I'll be here, helping you along the way. I'll work with you as your editor, your collaborator, your writing coach. My job is to help you share what ImproveCareNow is through your story. And it's also to take your story, and the stories of many others, and showcase them together so they reveal the bigger picture. And that is how we will go from stories, to the WHOLE story. That's how we'll go full circle.

- Sarah

Look on Twitter, Facebook, LinkedIn, and many other social media outlets over the past few weeks, and ImproveCareNow is all over the place. Many quotes about “parents as partners,” “real patient engagement,” and “amazing collaboration.” It’s fantastic to see the buzz we are generating. It’s huge, and important, and feels like it will catalyze many others who are working on similar efforts to jump in and do the same. We have a lot to teach now, even as we learn. It’s helping us achieve health outcomes we did not think possible and will probably help others do the same.

But what does this mean at the micro level, in the day-to-day shuffle (and sometimes tornado!) of getting the real work of running this complicated Network done? I don’t pretend not to realize that the care teams out there across in our 65 centers are doing the hard work – planning visits in advance, getting to know our new automated reporting tools, and trying to fit this all into their already complex clinic workflows. They (with the families they serve) are real heroes in this Network. But a lot of work also goes on at the ImproveCareNow leadership and staff levels to make it all possible. And I consider myself very fortunate to be in the position, as part of this team, where I get to see how many of the pieces fit together, and witness the not so subtle shift in what it means to “work for ImproveCareNow.”

I’m going to use our recently completed Spring Learning Session as an example. Even just one year ago, planning the Learning Session meant that the core Quality Improvement (QI) project team and I looked at Network priorities and recent lessons learned, identified who would do a good job speaking about these things, and pieced together what usually turned out to be a good agenda for a good meeting. Parents and patients were starting to attend Learning Sessions, but were on the fringes and some would tell you they spent their weekend trying to figure out where they fit in. We felt good about including them, but we didn’t feel good about not understanding quite how we all fit together.

What a difference a year can make! In planning for the Spring 2014 Learning Session I found myself watching as unprecedented collaborations between clinicians and parents, data managers and parents, took place across the miles. In one instance, what began as an offhand comment about the potential for a parent panel at the Learning Session, which would address how centers can better engage families in QI work, became a series of many, many emails between a clinician, several parents, and ImproveCareNow staff. Over three months we worked together to co-design the objectives and draft a call-to-action that the panel could deliver to the Network. The result was one of the highlights of this Learning Session.

In another instance, a parent asked for permission to use Network remission data in his presentation—the kind of data that he knew could illustrate the ImproveCareNow story best. Again, I found myself watching an amazing email discussion unfold between the parent, our ImproveCareNow data manager and the centers that agreed to have their data displayed in a novel way by a parent. This kind of conversation about data (“send me that,” “no, let’s try it this way,” “yes, that will have the most impact”) happens all the time within ImproveCareNow. But until now, had been limited to QI, data management, communications, and IT staff.

I used to believe ImproveCareNow staff and leadership needed to work for the clinicians, parents, patients and others that make up this Network…they were partners, but also customers and we had to make it all work well for them. I now realize it’s all about working with them so they can help us get things right. So yes, I work with the many care teams who are providing more proactive and reliable medical, nursing, nutritional, social work, and psychological support to pediatric patients with IBD. But I also work with Justin, Jamie, Sami, JenJo, Jennie, Tania, Beth, David, and many, many others who have ideas and experiences that also need to be integrated into this learning health system.

Today these patient and parent partners email me just as any of my other coworkers would. They email me during the work day, but also at 11:00 PM and 4:00 AM, during their time. They do so despite having busy full-time jobs inside or outside of their homes and despite the extra time they already devote to caring for children with a chronic illness. They share their ideas, ask for my input, worry about pushing us too fast (I often hear: “we’re not going to get you all fired, are we?”), worry about not pushing us fast enough, and ask how my kids are doing. I push them to post things on our internal knowledge-sharing platform, the ICN Exchange, just like I push the care centers. They are creating 90-day goals to focus and guide their work just like the care centers.  Most of all, they are helping us walk together into a new model for running this Network, understanding we won’t get it right every time, caring about the impact on others who are new to this level of partnership too, and above all, making sure we all stay connected to what this work is really about:

In only a couple of days, there will be a flurry of texting between Sami and I, sending pictures of packing and potential Learning Session outfits back and forth. Yesterday I sent Sami a few pictures of a sample outfit, to which she instantly texted back, “I like it!! It looks professional and cute!” (Note: said outfit was, indeed, packed immediately)

Last night I was pouring over an email with the Learning Session agenda, clicking on the various hyperlinks for teasers about the plethora of exciting things to come. One link sent me to pictures posted on the ICN Exchange of various ImproveCareNow teams; I chuckled at the Boston Children’s Hospital team’s faces photo-shopped onto duck statues (a la Make Way for Ducklings), the Children’s Healthcare of Atlanta team’s matching t-shirts, the MassGeneral Hospital for Children team’s “We love ICN” sign (complete with a full GI tract doodle), and – finally – the ICN Exchange “Team Oscar Selfie” (a gutsier version of Ellen’s now infamous Oscar celebrity selfie).

Nothing like previewing pictures of the big-hearted, gutsy-humored, determined-with-all-their-might-to-change-chronic-illness-care care center teams to get me excited about the Spring Learning Session!

Sami and I have tried (and, notably, failed) at accurately articulating the pure excitement, joy, motivation, and positive energy that’s simply contagious at the Learning Session. Here in text, it sounds cheesy and like ImproveCareNow is prodding us to write down such ooey-gooey sentiments. But, let me reassure you on behalf of Sami and myself, our ooey-gooey praise is exceedingly well-deserved and comes directly from our hearts (read: guts).

In addition to the undeniable culture of optimism and innovative thinking, there are always particular sessions we just cannot wait for. Following are the things we look forward to most at the Spring Learning Session:

• 
  PAC Reunion: The Learning Session is the one time when the PAC Leadership is able to brainstorm in-person (and also eat lots, and lots of candy!). We look forward to seeing each other face to face, and are always astonished by the amount of important work we get done in a couple of days. This Learning Session will be the first where our full PAC Leadership will be in attendance (PAC co-chairs - Jennie & Sami, and Patient Scholars - Katherine & Tyler) – we just can’t wait!!

• 
  QI Fundamentals: Sami and I stumbled upon this last year as we both arrived early, and were quickly enthralled with the phenomenal centers who are our newest family members in the network. This is a wonderful opportunity if you’re in need of some inspiration (note: by the end of the weekend, you’ll be bursting with inspiration!) or a Quality Improvement refresher, and is a fantastic way to meet upcoming superstars in the network.

• 
  Opening Reception: Here, there, and everywhere – the reception is filled with amazing people and is an awesome chance to network, socialize, and get the 411 on the network’s progress and innovations with the variety of poster presentations. Also, keep an eye out for some Patient Advisory Council members who will be reprising their roles interviewing reception attendees!

• 
  The Learning Health System Today and Tomorrow: The opening never fails to deliver in motivating every cell of every attendee, and – who are we kidding – we always love seeing Dr. Margolis and Dr. Colletti (and, if we’re lucky, they’ll coordinate their outfits!).

• 
  Lunch: Food, food, more food, and lots of networking! We always fill up with some nourishment and get the chance to meet new centers, parents, and the clinicians at various centers that we are humbled to call friends.

• 
  The Learning Health System, The Months Ahead: The closing is reliably the time when you will need a stash of tissues compliments of the remarkable speeches from parents and patients. After the excitement of the weekend and the endless research ideas and connections you’ve developed, the closing is a perfect opportunity to digest (yes, pun intended) the entire experience and head home with genuine motivation that you won’t soon forget.

We can’t wait for the collaboration, the innovation, the passion, the insight, and to continue to watch children and their families living with IBD receive better, and better holistic healthcare.

So pack your bags (or join us on Twitter and follow the Learning Session hashtag #ICNLS) and get excited – the Spring Learning Session is just around the corner!

Jennie + Sami

For many reasons. But one that comes to mind right away is that we didn't get to opt-in to this disease. We are in - all in. Over the course of this journey, we have had to learn to navigate many paths. We've experienced phone call processes, waiting rooms, treatments, and planning around a disease that at times consumes our thoughts and actions. We didn't navigate these paths for a higher purpose or with greatness in mind. We did it because we had to. And on some many occasions, the work of navigating was hard. We found ourselves exhausted by the tasks and fearful of the next step.

And then suddenly, there was this opportunity. One that I could choose. One that was organized around the idea of improvement.  A place to use my insight and experiences - what had become my expertise as a parent of a chronically ill child - to add value and depth.  Because, you see, I NEEDED to have a place to use this knowledge I now have. I desperately wanted my work of navigating and fighting to matter, not just for my son...but on a larger scale.

The first time someone on my team asked my opinion or my thoughts...the first time I came to a Learning Session and someone asked me to weigh in on a conversation, our journey became easier...because it was needed.