The Childhood Arthritis and Rheumatology Research Alliance (CARRA) is reflecting on the remarkable life and legacy of Norman Ilowite, M.D.

Norm, who passed away at age 70 on July 30, was a founding member of CARRA, a dedicated leader in pediatric rheumatology, and a dear friend to many in the CARRA community.

Norm was a Professor Emeritus at Albert Einstein College of Medicine and the former Chief of Pediatric Rheumatology at The Children’s Hospital at Montefiore. He was known for his skills as a clinician, as well as his many research contributions, which included more than 100 peer-reviewed publications and close to 50 reviews and chapters.

“Norm was a wonderful, wonderful person – kind, witty, sharp, insightful and so very, very smart,” said Carol Wallace, M.D., Professor Emeritus of Pediatrics at University of Washington, who added that Norm had the best laugh.

Wallace was a co-founder of CARRA with Norm and she collaborated with him for many years.

“I am fortunate to have worked with him for decades – to build CARRA as well as pediatric rheumatology; to train the next generation of Pediatric Rheumatologists and researchers; and to spend countless hours developing and conducting impactful clinical research,” said Wallace.

Earlier in his career, Norm was a scientist who modeled bench-to-bedside translational research before it was popular. His research interests included juvenile idiopathic arthritis, systemic lupus erythematosus in children and adolescents, juvenile dermatomyositis, pediatric systemic sclerosis and localized scleroderma, and more.

Norm helped champion the field of pediatric rheumatology throughout his career. He trained with Dr. Jane Schaller, one of the founders of pediatric rheumatology, long before the specialty was recognized by the American Board of Pediatrics and before formal training programs. He went on to found divisions in pediatric rheumatology at several medical centers, including fellowship programs, and was one of the initial members of the pediatric rheumatology sub-board for 6 years, serving as chair in 1997-1998.

Norm made a lasting impact on the field of pediatric rheumatology that will be felt for generations to come, said Yukiko Kimura, M.D., who is Chief of the Pediatric Rheumatology Division at the Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center and Professor of Pediatrics at the Hackensack Meridian School of Medicine.

“Norm touched so many of our lives with his intelligence, leadership, and humor. He helped build our community in countless ways, small and large, and always did so with humility and selflessness,” said Kimura, who is a founding member of CARRA. “He had a great talent for being able to make each and every one of us feel very special.”

Kimura said Norm was an important mentor to her, and it was because of his encouragement that she became interested in clinical research and later became a leader of CARRA.

Laura Schanberg, M.D., a CARRA co-founder and a Professor of Pediatrics at Duke University Medical Center, worked closely with Norm for many years through CARRA.

“I will keenly miss his wisdom, wit, and humor,” said Schanberg, adding how much she always appreciated his insight and guidance. “His contributions to CARRA began at its inception and strongly influenced several generations of CARRA’s leadership. We consider him a bedrock of what is now CARRA.”

Schanberg served with Norm for nine years on CARRA’s executive committee, where they were responsible for everything CARRA-related – from picking the menus for CARRA meetings to deciding whether to incorporate. 

“He was always totally worried about our finances while I was always pushing to take some risks and it balanced out well,” Schanberg said.

She described those days as demanding but invigorating, as there was a shared joy in working with friends to create a research community in pediatric rheumatology.

Norm’s work with CARRA spanned across two decades, as he served as a founding steering committee member, executive committee member, and eventually President. Under his guidance, CARRA became an established and recognized research network and was able to obtain the first seminal NIH grants that created the CARRA Registry and started the CARRA program of consensus treatment plans (CTPs).

Norm always understood the critical nature of collaborative science and research, said Schanberg.

He was also actively involved with American College of Rheumatology (ACR). Norm served on many ACR committees and held multiple leadership positions such as Co-Chair of the Pediatric Abstract Committee, Executive Council member, President of the ACR NE Region, Co-Program Chair of the Pediatric Rheumatology Training Program Directors meeting and Program Chair of the Annual Scientific Meeting (1999-2000).

Norm earned recognition as a Master of the American College of Rheumatology, which is one of the highest honors that ACR bestows.

In addition to ACR and CARRA, many other organizations looked to Norm for his insight and guidance, including the American Academy of Pediatrics, the National Institute of Musculoskeletal and Skin Diseases (NIAMS), the American Board of Pediatrics, the Arthritis Foundation, the International League of Associations in Rheumatology, the Pediatric Rheumatology Collaborative Study Group, and the Pediatric Rheumatology European Society.

“He was the ultimate champion of pediatric rheumatology, in his own quiet – but extraordinarily effective – way,” Kimura said.

The CARRA community extends our deepest condolences to his wife, Cheryl, and his entire family. In lieu of flowers, Norm’s family has said that donations may be made to CARRA in his memory. Click here to donate.