Madi’s Story

Girl leaning against tree

Kindergarten is about making friends, learning how to count by two’s, and reading Biscuit books. But for Madi, Kindergarten was not so simple. In September 2018, she began struggling with muscle weakness, and her legs hurt. At first, her parents guessed it was just growing pains, and that’s common for kids.

But by the time October came around, the pain had gotten worse. They went to appointments with so many doctors to find out what was wrong. Despite all the labs run, they could not figure out what was happening in Madi’s body. It wasn’t until they chose to change doctors that the breakthrough began. Their new doctor’s pair of fresh eyes immediately knew something serious was wrong.

Madi was referred to Cook Children’s Hospital in Fort Worth, Texas. At this hospital, she met Dr. Guirola, who ran labs but also took a biopsy. He arrived at Madi’s diagnosis—juvenile dermatomyositis.

Madi was admitted to the hospital, where she would have to stay for the next week. And for the next year, she would have to be in physical and occupational therapy. But now, three years later, Madi has seen a lot of improvement. That’s not to say she doesn’t still have hard times—days of struggle do happen. But as of May 2022, her latest lab results brought good news. She’ll finally be able to get off methotrexate, a chemotherapy agent. Hope is hiding around corners of this busy maze, and we need only to believe it’s there.

Madi’s family loves being a part of the Cure JM Foundation. They know firsthand how important it is to help raise money to find a cure. And the advice to new JM families from Madi’s mom, Jennifer? Reach out to the JM Facebook pages. They’ve helped answer a lot of questions. No one is alone—not one patient and not one family. In the Cure JM community, we’re all united by a shared love for our children and a shared hope that one-day JM will be old news, never to disrupt kindergarten classrooms, play dates, or soccer practices.

Cure JM Partner Researcher Uncovers New Biomarkers. Fionnuala McMorrow. University of Bath, UK

Cure JM-Funded Researcher Uncovers New Biomarkers

With your financial support, Cure JM is proud to have funded Fionnuala McMorrow, a Postgraduate Research Student in the Department of Life Sciences at the University of Bath, to embark on a critical research project. Fionnuala’s team analyzed blood samples from the UK to investigate two specific biomarkers (anti-CCAR1 and anti-Sp4) recently identified in U.S. patients with JDM and related conditions

Ask the Doc - Sun Protection Tricks and Tips - Sheila Angeles Han and Kalyani Marathe

“Ask the Doc” – Sun Protection Tricks & Tips for Summer 2023

With summer underway, we are honored to share our latest “Ask the Doc” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, and Kalyani Marathe, MD, MPH of Cincinnati Children’s Hospital, share the importance of sun protection for JM patients.

Sun Protection Tips & Tricks: What Parents, Grandparents, and Patients Need to Know

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