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IVIG – What Parents and Caregivers Need to Know

Town Hall April 2024, IVIG, Tory, Cherwin, Vogel, Alderfer

Hear from a panel of four experts about IVIG, including important tips for a successful IVIG journey.

Presenters include: VP of Patient Advocacy Michelle Vogel, MPA at IV Solutions RX, Heather Tory, MD, MPH, CPPS, a Pediatric Rheumatologist and Associate Chief Quality and Patient Safety Officer at Connecticut Children’s, Laurel Cherwin, BSN, RN, IgCN an immunology Clinical Nurse Educator, Medical Affairs Octapharma and Kristine Alderfer, President, Cure JM Board of Directors.

The panel will discuss a variety of must-know information on successful IVIG treatment days, navigating the system, at-home vs. outpatient options, pre & post-treatment checklists, and more.

Unveiling the Future of Hope, Malloy and Heaton, September Town Hall 2024

Unveiling the Future of Hope

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.

Getting the Diagnosis. Megan Curran, MD

Getting the Diagnosis

It often takes a bit of time for children with juvenile myositis (JM) to get a proper diagnosis. This is due to the fact that

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.

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

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