Sun Protection

Whether newly diagnosed or well into your JM journey, you’ve probably heard that sun and ultraviolet light can be a factor in triggering disease activity. Unfortunately, the harmful UV rays aren’t limited to tropical regions or only the summer months. Even on a cloudy day or in the winter months, sun protection plays a crucial role in managing JM.

However, with summer underway, this important topic is on our minds. Our families and patients often wonder the best ways to protect themselves or their children during the most UV-intense months. Therefore, Cure JM is honored to present an, “Ask the Doc,” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, of Cincinnati Children’s Hospital (a member of the Cure JM Clinical Care Network) and Kalyani Marathe, MD, MPH Division Director of Dermatology at Cincinnati Children’s Hospital, share the importance of sun protection for JM patients.

 Watch Dr. Marathe and Dr. Angeles-Han to learn more about:

·      Choosing and applying the best sunscreen for all skin colors

·      Choosing the proper sun protective clothing

·      Why sunscreen and sun-protective clothing is important for JM patients

·      Considering sunscreen as a form of medicine

Additionally, Dr. Susan Kim, MD, MMSc, Associate Professor, Associate Clinical Professor of Pediatrics at the University of California, San Francisco Department of Pediatrics, and Dr. Adam I. Schiffenbauer, MD, Staff Clinician, Environmental Autoimmunity Group, National Institute of Environmental Health Sciences at National Institutes of Health previously presented detailed information to Cure JM families about ultraviolet light, sunscreen, best practices for protecting patients, and the latest approaches in managing skin disease.

Dr. Kim and Dr. Schiffenbauer present useful information regarding:

·      Ultraviolet and artificial light as it pertains to JM patients

·      The UV index and how to limit one’s exposure

·      Choosing and applying sunscreens during different seasons

·      Treatments for skin in JM patients

These presentations provide valuable information to get JM patients through not only the summer months, but year-round. 

The Potential of JAKs in Fighting JM

In our June 2024 “Ask the Doc” Town Hall, Dr. Julie Paik joins in a Q&A session to shed light on what JAK inhibitors are, how they work in JM, when parents might consider discussing JAKs as a treatment option, and the pros and cons of their use.

The Potential of CAR-T Therapy in Myositis.

The Very Real Potential of CAR-T Therapy in Myositis

We expected to hear promising news about the potential for CAR-T therapy to treat myositis at the Global Conference on Myositis (GCOM).

What we heard was more than promising—it was astounding.

What if I told you that there was a therapy that would “reset” the immune system—virtually eliminating the autoimmune response in myositis that causes inflammation, pain, muscle weakness, and other JM conditions of which we are all too familiar.

Helping Parents & Kids When They Express High Emotional Distress

This expert-led presentation is for parents about how to help their kids and themselves when their kids express high levels of emotional distress. Our presenters will talk about ways parents can calm themselves, share tips for talking to kids with age-appropriate information, and know when to find help from a professional. There will be a Q&A session immediately following the presentation.

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