January 2023 President’s Report

Dear Friends,

I am delighted to have Mr. Mathieu Nelessen on board as CARRA’s new Chief Executive Officer (CEO)! Mathieu was selected by a CARRA CEO task force after a 3-month nationwide search and started with our organization on January 9th. Mathieu brings extensive leadership experience from many years at the American Red Cross,where he most recently served as Vice President of Business Strategy and Planning,Biomedical Services. Prior to his work with the Red Cross, Mathieu was CEO of the New Jersey Chapter of the American Diabetes Association. Mathieu is a graduate of Rutgers University where he competed as an NCAA Division I athlete in crew. I know how enthusiastic he is about leading CARRA and strengthening our capacity to realize our mission. I encourage every CARRA member to get to know our new CEO!

The last year has been one of significant change for our organization. We’ve transitioned to a CEO-led model of operations and are indebted to Larry Hausner who led this effort while serving as interim CEO. CARRA’s staff transition was facilitated by John Seng and his management consultancy firm, Grayscale, to enable a smooth separation from our previous association management company. In addition to thanking Larry Hausner and John Seng for their leadership and commitment to CARRA’s mission over the last year, I want to acknowledge our core staff who helped us navigate the many bumps in the road with alacrity! From research and grants management (Leslie Hanrahan, Karin Tse, and Marcia Smith) to communications and engagement (Kelly Mieszkalski), to patient engagement (Vincent Del Gaizo) and finance(Stephen Witte), I can’t think of a more dedicated group of professionals. An additional shout out to our executive (Jessica Parada) and administrative (Ashley Hall) assistants for their hard work and commitment to CARRA.

While we’ve made tremendous progress since the start of 2022, reorganization continues. We’re now consolidating research operations and working to increase clarity and efficiency in decision-making processes while ensuring that committee work and new efforts are aligned with the strategic plan. Increasing revenue will be critical to meet financial challenges to support our critical mission.

Annual Scientific Meeting

For the first time since 2020 we will be meeting in person for CARRA’s Annual Scientific Meeting (ASM)(hurray!). While a hybrid meeting would have been ideal, having a virtual option approximately doubles audiovisual costs (which are significant for a gathering like this), and the budget simply wasn’t large enough. Looking to the future, different options will be considered to keep everyone maximally engaged.

This year’s ASM will feature pre-conference sessions from a registry retreat to fellows and early investigators programs, and orientations for pediatric residents and new patients/caregivers. The plenary session will focus on the future, with an overview of CARRA’s emerging research agenda, a presentation on the launch of new consensus treatment plans, and the use of real-world data from registries.

In closing, I continue to be amazed by all of the outstanding accomplishments of CARRA members, staff, and our patient/caregiver partners that put our organization at the forefront of pediatric rheumatology research. Your efforts are recognized and appreciated!

– Bob Colbert