Volunteer Spotlight- Alexandra Hackney

Meet Alexandra Hackney, a young adult who battled JM for 13 years and is now using her own experience to provide hope, inspiration, and coping skills to newly diagnosed teens and young adults.

Alexandra supports others affected by juvenile myositis as a Peer-Support Representative for patients aged 18-30. She also serves as one of the volunteer leaders of Cure JM’s newly formed Advocates Council for young adult patients, making her voice heard as new clinical trials and treatments are planned.

We are so grateful for Alexandra’s efforts to move our mission for future generations of juvenile myositis patients. Click below to learn more about Alexandra and her inspiring story.

Read Her Story

Read an exciting update from Alexandra

Alex Hackney’s Story

Despite battling juvenile dermatomyositis (JDM) as a child, Alex Hackney never envisioned becoming a marathon runner, let alone completing prestigious races like the Chicago and New York Marathons. With over 15 years of grappling with JDM, Alex recently completing her third marathon and found closure and perspective in Chicago.

Exercise and Juvenile Myositis

In this presentation, Dr. Laura Tasan explains the importance of exercise for JM patients. Since JM children suffer from endurance and fatigue issues, exercise for

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