IVIG: What Families Need to Know

In this session, learn about IVIG (immunoglobulin therapy administered by vein):

  • What is IVIG?
  • When do doctors consider IVIG as a treatment?
  • What can you and your child expect during an infusion?
  • What are the tips for the day of the IVIG treatment?
  • What do you need to know about insurance?

This session features:

  • Dr. Fatma Dedeoglu of Boston Children’s Hospital
  • Huub Kreuwel Ph.D., of Octapharma Plasma
  • Patient advocate Michelle Vogel, of CSI Pharmacy
Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

Walking Strong, Empowered by unity

Walking Strong – Empowered by Unity

Like other teens new to the JM journey, Catie Beth Caldwell and Madi Cook were two individuals who felt alone at the beginning of their journeys. Catie Beth was diagnosed just before the Covid-19 pandemic took hold of the world as we knew it. With this came feelings of isolation and loneliness. These emotions were commonplace for many teens but were only compounded by teens new to a rare disease diagnosis. These first years of the “new normal” were difficult to navigate.

Ronda Thorington, April Town Hall Web Size, Updated for Resources

Resilient Parenting

Parenting a child with a rare disease comes with unique challenges—but you don’t have to navigate them alone. Join us for a powerful and practical

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.

Cure JM supports families, patients, and the juvenile myositis research community.

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