Breaking New Ground at the Rheumatology Research Foundation Investigators Meeting

When I was invited to attend the Rheumatology Research Foundation investigators meeting this year as both a member of the IAC (Impact Action Council) and a Rheum Champion, I was immediately excited. Nervous, but excited. The opportunity to immerse myself in science, meet scientists of rheumatology, and connect with a few of my fellow rheum champs filled me with anticipation.  Meeting so many new people, traveling to a new place, gave me some anxiety. All things weighed, I knew it would be a valuable experience for me and a chance to advocate for others who find themselves in a fight with their own immune system.  It would be an opportunity to make connections and bridge the gap between patients, rheumatologists, and researchers.

The connections I’d hoped to make with the other Rheum Champions began before I even landed in Denver, with a group chat forged by the tenacious and energetic Cheryl Crow.  Chatting about our travel plans soon turned into planning a meetup before our scheduled introductions. Excited and nervous to meet some of my spoonie community heroes in real life, I timidly introduced myself. Getting to know one another over breakfast, we swapped war stories, talked about our travel experiences, and wondered what we would be doing over the next few days.

At our official introduction later in the morning, we met the remaining rheum champions and the first of many amazing Foundation organizers and council members.  After a more formal introduction to the foundation and each other, we were asked for our feedback about being a rheum champ and our experience with the new rheum lab website launched in September of last year.  Along the way, we discovered that we were pioneers, as the first bunch of patients/rheum champions to join the investigators meeting.  As six of the twenty current rheum champions, we were breaking new ground together. 

What amazing new ground it was.  Forging friendships, bonding over a common cause, sharing ideas and information. It was everything I imagined and more. As we met and interacted with foundation members, rheumatologists and rheumatology scientists over the next two days, two things really stood out.  Their passion for their work, which is contagious.  And just how much they want to solve the problems rheumatic diseases create in the lives of patients.  The number of studies focused on patient care, patient outcomes and honing in on better disease management strategies was encouraging and inspiring.

Even studies that didn’t focus specifically on patient care and decision making, seek to improve the outcome of disease management and thus somewhat inadvertently improve the lives of patients. When Rheum Champion Alan Brewington spoke up and asked the researchers to tell us how their research seeks to improve patient lives, it helped to highlight that fact.  Rheumatology research seeks to solve the issues of patients with rheumatology.  The number of new theories being tested, gives me great hope for the future of these diseases.  Innovative ideas bring new understanding.  Or they rule out the possibilities.  Both move science forward. 

Another theme that ran through the event that I found both inspiring and reaffirming was the focus on reaching patients.  In the science being done, in the conversations I had with foundation members, scientists, and rheumatologists, over and over it was, how do we reach patients.  How do we teach them what they need to know?  How do we give them the tools they need to understand and manage their disease? How do we empower them to make the right choices and have a healthier patient outcome?  The answers of course are multiple and varied.  The variables involved are as different as the individual patients who need to be reached.

I believe we took an important next step down that path in Denver.  Bringing patients and rheumatology professionals together helps to break down the barrier that many patients feel.  On that common ground we can work together to increase awareness and multiply patient education.  Coming together with the shared goal of improving the experience of rheumatic patients empowers and enlightens doctor and patient alike.  It allows us to talk about the things that may be getting in the way.  To shift the barriers to care that both rheumatologist and patient face.  To improve the lives of people living with rheumatic diseases.  At the end of the day, that really is the goal of everyone involved. 

Interested in learning more about the Rheumatology Research Foundation and how you can help them with their mission to advance research and training to improve the health of patients living with rheumatic diseases. Follow the Link to learn more today!