Emma’s Story of Hope – A Tale of Life-Changing Care

Emma's Story of Hope, Giving Tuesday 2024

At 12 years old, Emma’s world was turned upside down. An energetic cheerleader who loved spending time with her friends, she suddenly found herself constantly fatigued, her muscles weak and aching. What began as mild discomfort quickly escalated into something far more serious.

Fortunately for Emma, she was diagnosed with juvenile myositis (JM) in 2024. Thanks to the Cure JM Foundation and its supporters, the time it takes to diagnose JM has been reduced from 12 months to less than 3. This early diagnosis meant Emma could start receiving life-saving treatment before the disease caused more damage to her body and spirit.

But Emma’s journey could have been drastically different. Twenty years ago, the outlook for JM care was bleak. With only a handful of specialists across the country, children faced long delays in getting diagnosed, often enduring years of suffering. Many kids didn’t survive the disease, while others lived with lifelong disabilities simply because doctors didn’t know how to recognize or treat JM.

Today, thanks to groundbreaking progress made possible by Cure JM’s supporters, children like Emma now have access to the specialized care they need. Through research, training, and improved treatment protocols, what was once a devastating diagnosis is now a manageable condition, giving children back their futures. Emma’s diagnosis came early, and her treatment was designed by experts who understand JM inside and out. Now, Emma is thriving—a beacon of hope for every child facing juvenile myositis.

This transformation is a direct result of your support. In 2021, Cure JM embarked on a mission to establish a nationwide network of doctors specially trained to diagnose and treat JM. This network is what saved Emma’s life.

Just weeks after Emma’s diagnosis, her family discovered that the Cure JM Clinical Care Network had a partnership at C.S. Mott Children’s Hospital in Ann Arbor, Michigan. There, Dr. Jessica Turnier led a team of doctors, researchers, and emotional support specialists, all focused on juvenile myositis. Known not only for her medical expertise but also for her compassionate approach, Dr. Turnier was a lifeline for teens and families grappling with this rare disease.

When Emma and her family arrived for their first appointment, the heavy burden of fear and uncertainty began to lift. Dr. Turnier listened intently to Emma’s story, carefully considering both her physical symptoms and the emotional toll the illness had taken. After running specific tests, Dr. Turnier confirmed that Emma had JM, an autoimmune condition causing her immune system to attack her muscles and skin.

For the first time in months, Emma felt truly seen and understood. Dr. Turnier laid out a treatment plan that brought hope, explaining how, with the right care, Emma could regain control of her life. She also connected Emma with a team of specialists, including physical therapists, a nutritionist, and a support network of teens going through similar battles. Emma was even able to meet with a psychologist in the clinic, offering emotional support throughout her journey. Most importantly, Dr. Turnier gave Emma and her family the confidence that they were not facing this fight alone.

As the weeks passed, Emma began to grow stronger. The medications and exercises Dr. Turnier recommended started working, and Emma began to regain her independence—walking without pain and even returning to school part-time. The Cure JM Clinical Care Network’s support extended far beyond just medical care; it included emotional support, educational resources, and access to cutting-edge research, making Emma’s future seem brighter than ever.

Dr. Jessica Turnier became more than just a doctor to Emma—she was a mentor, a guide, and a source of hope during one of the most challenging times of Emma’s life. Thanks to the personalized care provided by Cure JM’s Clinical Care Network at C.S. Mott Children’s Hospital, Emma felt empowered, knowing she had an entire team in her corner dedicated to her well-being.

Months later, Emma returned to cheer practice—not yet at full speed, but with fierce determination and hope. Though there is still a long road ahead, thanks to Cure JM’s Clinical Care Network and the unwavering support of Dr. Turnier, Emma has reclaimed her strength and her future.

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Parent and Teen Mentors

Feeling Lost After a Myositis Diagnosis? Find Support with Cure JM Mentors! Cure JM is a strong community – a “Family of Families” – and

GCOM 2024, Executive Director Update

GCOM 2024 Round Up

Recently, Cure JM’s Jim Minow was able to attend the Global Conference for Myositis. This conference was not only informational, but was a most impressive day for Cure JM. The conference brings together leading myositis researchers from around the world to share results and collaborate on future projects leading to better care and improved treatments for our JM kids.

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