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.

Parrish Story of Hope

Parrish’s Story

We would like to introduce a one-of-a-kind, competitive, and determined young man, named Parrish. His story of resiliency and hope is one that will resonate with many of us in the Cure JM family. Parrish faced many challenges in his journey with JM, but found hope and support in his family and the Cure JM community. We are pleased to now share his experience to help others facing the same struggles during Myositis Awareness Month.

Why I Walk- Ellen Stream

Ellen Stream’s Story: Walking and Quilting for JM Families

Ellen Stream’s love for her granddaughter, Brooklyn, fuels her commitment to the juvenile myositis community. When Brooklyn was diagnosed with juvenile dermatomyositis (JDM) at two and a half, Ellen faced a wave of fear. Would Brooklyn run and play like other kids? Could she enjoy school, sports, or friendships without the weight of infusions and flare-ups? Those early days brought uncertainty, but Ellen and Brooklyn’s other grandmother built a support system across miles, showing distance doesn’t dim love.

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.

Interested in DIY fundraising but need help?

We’re here to help!

To have your fundraiser matched, add “DIY Match” in the memo of your online gift or check.