In This Issue

🩺  Stacey Tarvin, MD, Appointed as Clinical Care Network Chair

🩺  Getting the Diagnosis - Megan Curran, MD

🩺 Embedded Behavioral Health Care in a Center of Excellence

🩺  CCOM 2024 - Save the Date

🩺  Peer Support Resources

Stacey Tarvin Appointed as Clinical Care Network Chair

We are honored to announce that Stacey Tarvin, MD of Riley Hospital for Children in Indianapolis, has been appointed as the chair of Cure JM’s Clinical Care Network. For years, Dr. Tarvin has led a research effort to help pediatric rheumatologists better understand the value of a class of drugs known as “biologics” as an alternative treatment for juvenile dermatomyositis (JDM), particularly in refractory cases. She also serves as the chair of the JDM Workgroup of CARRA. In her new role with Cure JM, Dr. Tarvin will oversee our efforts to build the Cure JM Clinical Care Network and expand quality care across the nation.

Getting the Diagnosis With Megan Curran, MD

With juvenile myositis being a rare disease, getting a timely and accurate diagnosis can be a challenge for some families. A timely diagnosis can be a critical factor in JM management and positive treatment responses.

We invite you to share this patient-focused resource featuring Megan Curran, MD of Children's Hospital Colorado, and the Cure JM Clinical Care Network, addressing the juvenile myositis diagnosis process for new patients and families.

Embedded Behavioral Health Care in Cure JM COE Clinic

A recently published study on integrating mental health care into a pediatric rheumatology specialty clinic, supported by the Cure JM Foundation, concluded that the need for mental health care is great, and despite the challenges, with the coordination of various stakeholders, it is possible. Published in Frontiers, the principal authors were Dr. Susan Shenoi, a pediatric rheumatologist and Director of the Cure JM Center of Excellence at Seattle Children’s Hospital; Dr. Joanna Patten, psychologist; Stacey Haynes, psychologist; and Suzanne Edison, JM parent, former counselor, and the Mental Health Coordinator at Cure JM.  

It is well known that youth with rheumatological or autoimmune diseases often have coexisting mental health symptoms, including anxiety and depression, that are difficult to address in the span of a medical visit to their rheumatologist. Yet, according to focus group studies that Cure JM funded and conducted in 2018, both parents and patients feel most comfortable with their pediatric rheumatologist and would prefer to speak to, or be approached for mental health support, in their office.

As a result of these findings, Suzanne Edison approached Dr. Shenoi about the possibility of integrating mental health services (psychoeducation, screening assessments, counseling, and referrals) into the Center of Excellence clinic on a regular basis, effectively making it a standard of care. This paper describes not only the need for mental health services and the barriers to integrating psychological services, but looks at one successful model, called Embedded Behavioral Health Care (EBHC), and the steps it took to achieve it.

Save The Date - GCOM 2024

The Global Conference on Myositis (GCOM) is coming back to the U.S. in 2024. The 2024 GCOM will be held in Pittsburgh, Pennsylvania, on March 13th-16th, 2024.

With the international conference happening every two years and often outside of the U.S., the upcoming dates will provide a timely opportunity to attend closer to home for those in North America.

Support Resources for Patients & Families

The Cure JM Foundation offers a variety of family and peer support resources and programs for parents, children, teens, and young adults who are affected by juvenile myositis.

We invite all clinicians and allied health providers to share the linked flyer with newly diagnosed and existing JM patients, highlighting our mission and delivering standardized resources and support. 

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