CARRA August 2020 Newsetter - Issue 2


Message from the President

It is almost the end of August. In any other year, we would be getting ready for the last few days of summer before heading into a new academic year……for some that brings the apprehension of a new teacher and new friends. Maybe a new book bag. For others a new commute. Maybe a new job.

This year, the world looks very different. For many there will be no returning to in-person school, which means fewer new friends. Others may have no commute, and sadly, no job.

But as reported in the CARRA 2020 update, CARRA has many reasons to be optimistic. We have many accomplishments to build upon. And we will continue to find creative ways to do our work in this new world that we find ourselves today.

Together, we have a lot to do, including the following;

  • We have over 8,000 patients in the CARRA Registry who need to be re-consented so that we can stay in touch with them virtually, through email and text.
  • We have a new disease affecting our patients (Multisystem Inflammatory Syndrome in Children (MIS-C)) to figure out.
  • We must take new steps towards ensuring diversity, equity and inclusion across all aspects of our organization.

CARRA’s mission will continue to steer us as we move forward. As President, my vision is that our work will also be guided by the following four words:

INCLUSIVE. COVID has brought to light the terrible health disparities that have long existed in our society. My vision is that we will take action, guided by the newly formed CARRA Taskforce for Diversity, Equity and Inclusion, to become a more inclusive organization across all of our activities.

RELEVENT. CARRA’s success is spawning many new opportunities, sometimes too many for us to take advantage of. We need to be careful to not do things just because we can. But rather because they have meaningful impact and help us to further our mission. So, over the next two years my goal is that we become good at making sure that we stay relevant. Scientifically relevant, and relevant to our patient’s lives and what matters most to them.

CONNECTED. CARRA has always been a virtual organization. As COVID has forced so many programs to pivot to virtual formats, we too must work together as a research community to find new ways to stay connected. My vision is that we will become even more connected, both with each-other and with our patients and their families.

FINISHERs. Finishing is hard. There are so many great starters in our community; people who want to succeed, and have promising ideas for how to make that happen. They inspire me. They begin each new pursuit with enthusiasm. But they don't always finish, because finishing is hard. One of my goals as President is to make sure that we finish what we start.

In recognition of our ambitious goals and the reality of our challenges, CARRA is launching several new programs to support our members, and to continue to move the organization forward:

  • We have expanded the intramural funding program, thanks to our partnership with the Arthritis Foundation, to provide more money, longer awards, and new funding opportunities for investigators in our community.
  • The Early Investigators (EIs) have developed a Research Development Program (RDP) to support CARRA EI's who would like additional guidance in project development and grant writing.
  • This Spring we will award an Outstanding Service Award to a CARRA member that has made meaningful contributions to the organization and consistently demonstrates excellence in teamwork and collaboration. See the request for nominations in this newsletter.

I would like to thank all of the individuals who have served on the Board of Directors, the Executive Committee and the Steering Committee, our administrative team and the many talented and dedicated CARRA leaders and members whose efforts every day bring us closer to achieving our mission. I would also like to acknowledge the commitment and support of the Arthritis Foundation, whose support and partnership has been critical to our success.

I am excited to serve as President of CARRA as we continue to grow and evolve over the coming years. I welcome your suggestions and questions. Feel free to email anytime, or drop by during my zoom office hours, every Tuesday at 1:30 pm PST (Zoom ID 415-502-6627).

Take care and stay healthy,

Emily von Scheven, MD MAS

Welcome, CARRA Fellow Co-Chairs!

Congratulations to our new fellow Co-Chairs, Jessica Bloom and Julia Shalen! Jessica is a 3rd year pediatric rheumatology fellow at the University of Colorado.  Originally from Michigan, and relocated to Colorado for pediatric residency and now fellowship. She is particularly interested in clinical outcomes research with a focus on ANCA-Associated Vasculitis in kids.  Julia is a 3rd year pediatric rheumatology fellow at UCSF, where she also completed medical school and her pediatric residency. Julia’s research interests center around medical education, quality improvement and access to care for pediatric rheumatology patients.

For the next year, our new Co-Chairs will be engaging fellows in CARRA activities and opportunities across the organization, and also develop and conduct the annual Fellow Pre-Conference program for CARRA’s Annual Meeting. We are excited to have Jessica and Julia on board!

Member Spotlight: Ashley Blaske Brings Pediatric Rheumatology Care to Eastern Tennessee!

Congratulations to former Fellows Section Co-Chair, Ashley Blaske, who started a new position serving adult and pediatric rheumatology patients at Arthritis Associates of Kingsport!

In her new role, Ashley represents the only pediatric rheumatologist in the East Tennessee area. Previously, Ashley’s patients drove 4-5 hours to see her when she practiced in Nashville. Seeing the need for more pediatric rheumatologists in general, but especially in rural areas, Ashley decided to take a non-traditional path and joined a private practice as opposed to staying in academia. Ashley is looking forward to continuing to stay involved with CARRA while helping patients in an underserved area receive the care they need. Eventually, Ashley hopes to work towards starting a new Registry Site at her practice.  

Now Accepting Nominations: CARRA Outstanding Service Award

We are excited to announce the launch of CARRA’s first-ever membership award! Our members work hard every day to advance research in pediatric rheumatology and improve patients’ lives. The CARRA Outstanding Service Award aims to recognize an individual who has made meaningful contributions to the organization and consistently demonstrates a high degree of excellence in teamwork and collaboration. This individual’s work has advanced CARRA’s goals in measureable ways and has also advanced the careers of CARRA members.

We are now accepting nominations for this award! Click here learn more about our new award and to submit a nomination.  Nominations are due by January 15, 2021.

Arthritis Foundation Updates

Connect on Campus  

Arthritis Foundation Live Yes! Connect Groups provide support for parents of children living with juvenile arthritis and other childhood rheumatic disease! These groups are part of an expanding range of Arthritis Foundation resources that provide personalized help & support to parents who have a child/teen with a childhood rheumatic disease. The Live Yes! Connect Groups for JA Parents offers connection, education, and empowerment. Learn more here:

Arthritis Foundation Care & Connect

Coronavirus & Arthritis - Patients and their families can stay updated and connected through this resource center - Care & Connect. It houses the latest information from experts and lets patients and families connect with others to get the support they need. In this challenging time, patients’ health and safety are the top priority as we go through this medical emergency together. Learn more here:

Important Deadlines & Updates

  • September 1: Letter of Intent (LOI) for CARRA-Arthritis Foundation Large Grants Due
  • September 30: International Myositis Assessment & Clinical Studies Group (IMACS) “Welcome to IMACS!” virtual Zoom meeting. For information about membership and details about the meeting, click here.
  • October 1: Applications for CARRA-Arthritis Foundation Small and Large Grants Due
  • November 1: Letter of Intent (LOI) for CARRA-Arthritis Foundation Implementation Science Design Grants Due
  • December 1: Applications for CARRA-Arthritis Foundation Implementation Science Design Grants Due (more info coming soon!)

If you have a story to share about yourself or another CARRA member, please reach out to Anna Tietgen, CARRA Communications Manager at [email protected]