Breakthrough Discovery: Misbehaving Mitochondria Linked to Juvenile Dermatomyositis
The generous support of our community has been instrumental in funding groundbreaking research this year, led by Dr. Christian Lood at the University of Washington and Cure JM’s Center of Excellence at Seattle Children’s Hospital. Dr. Lood’s team has identified calcified mitochondria in the muscle tissue of JDM patients with calcinosis – a finding that sheds new light on understanding JDM
FAQs about the RESET-Myositis Trial for CAR-T
1. What is Cabaletta’s RESET Myositis trial? RESET-Myositis is a phase 1/2 clinical trial being conducted to evaluate the effects of the investigational cell treatment CABA-201 in patients with dermatomyositis (DM), antisynthetase syndrome (ASyS) and immune-mediated necrotizing myopathy (IMNM) who have active disease. Patients with juvenile myositis and dermatomyositis are eligible to apply. 2. What […]
The Carpenters turn Lemons to Lemonade!
The Carpenter family hopes their efforts will raise awareness for Cure JM and bring hope to families like theirs.
The community went above and beyond in showing their support for the lemonade stand.
The 1000 cups with lids the Carpenters ordered quickly cleared out as more and more lemonade was sold!
Helping Parents & Kids When They Express High Emotional Distress
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.
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.
Optimizing Myositis Care: The Role of Biologics
Biologics are a therapies that derived from living cells or through biological processes. They are a promising new class of drugs used to treat myositis. Unlike traditional medications that suppress the entire immune system, biologics target specific parts of the immune system involved in the inflammatory process. A few notes: Types of biologics used in […]
IVIG – What Parents and Caregivers Need to Know
Hear from a panel of four experts about IVIG, including important tips for a successful IVIG journey.
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.
May 2024 Symposium
The Spring Cure JM Medical Symposium in partnership with Duke University happened May 23rd, 2024, virtually, with presentations from world-leading researchers and clinicians on advancements in basic research, translational studies, and best practice clinical care in juvenile dermatomyositis.
Volunteering Speaks Volumes
Are you eager to make a meaningful impact and connect with a community committed to an important cause? The Cure JM Foundation welcomes passionate volunteers like you! Whether you can spare just a few moments or have more time to give, your dedication can greatly advance our mission.
Volunteer Spotlight- Kristine Alderfer
Kristine has been involved in Cure JM through volunteer roles for many years, and her involvement has become a family affair, as her daughter Katherine is a patient advocate for others with the disease.
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 it is rare, it comes in many different forms, and the disease looks different for each individual. Getting a diagnosis is important no matter how long the process takes. Click […]
Jim’s 2023 Cure JM National Family Conference Recap, Washington, DC
Cure JM held its first post-COVID Family Conference earlier this summer. The conference was an extraordinary experience for families and leaders on so many levels, and I remain in awe of everything this organization has achieved because of the passion you bring to our mission.
Shop to Support Cure JM
We have compiled a list of Cure JM items you can purchase, as well as other products, that might help you and your child in their JM journey.
Video Resources
At Cure JM, we want all our information to be accessible to you and your family. We have compiled all of our video resources in one place for you to view at your leisure.
Jim’s 2024 Resolutions
Each January, I share with our community a few personal New Year’s resolutions for the year ahead. I believe these resolutions help us keep a keen focus on the priorities that matter most—better treatments, better care, and a cure for JM.
Austin Krainz’s Story
Austin Krainz, diagnosed with juvenile dermatomyositis at the age of seven, overcame the challenges of a rare disease with the support of his family and pioneering treatment from Dr. Lauren Pachman. After more than a decade of battling the illness, Austin entered remission, fulfilling his childhood dream of professional racing in Porsche’s GT America series.
Season of Gratitude
I am writing to wish you and your family the very best this Holiday Season. This time of year, especially, I am filled with deep appreciation for all that Cure JM families have accomplished to advance our mission, to improve the lives of children living with JM, and to support the doctors and researchers driving better treatments as we fight for a cure.
Sydney’s Story
Spring break should be about fun and relaxation. Sandi and her husband Zack expected their trip to Mexico would be the same. Of course, taking their two young toddlers with them wouldn’t guarantee much relaxation, but they were counting on the fact it’d be fun for the family. From the very beginning of the trip, […]
Love Letter to My Grandparents
Dear NaNa & PaPa, I appreciate all the love you have given me throughout my life. From the very beginning, you have been my biggest supporters, and I carry that love with me every single day. When I was diagnosed 13 years ago, I know it must have been scary for you. Nana, I’ll never forget how fiercely you […]
A Peek Inside Progress
In January, Cure JM presented a town hall on the achievements of 2023 and goals for 2024.
Research Achievements
A task that seemed daunting 20 years ago, to change the world for patients diagnosed with juvenile myositis, is now within our reach.
Partnerships in Developing New JM Treatments
In October, Cure JM had two speakers give an update about drug discovery in juvenile myositis.
Ways to help your kids and yourself cope living with JM
Cure JM Mental Health Coordinator, Suzanne Edison discusses ways to help your kids and yourself cope living with JM. Learn about emotional and behavioral challenges that often come with chronic diseases like juvenile myositis and ways to help patients and caregivers cope.
DIY: The Carlson’s Ride Strong
Our first feature sheds light on the Carlson family’s (Grandparents of Emma Weiss) cycling campaign to raise awareness and funds for JM kids like their own Emma. The Carlsons tackled two rides covering over 500 miles in the beautiful Pacific Northwest. Q & A With The Carlsons About Their Adventures 1) Tell me about […]
Affordable and Accessible Treatments for JM
Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.
Two Grandmothers’ Stories
Two Grandmother’s share their story and experience when their granddaughter Emma is diagnosed with JM.
Sari’s Story
Sari’s pain began in September of 2018, during gymnastics practice. It started in her shoulder. She didn’t give it much thought. But then it worsened, soon becoming constant. One night, she was on gymnastics bars continuing her work after practice. She wanted to execute a particular skill, but the pain stopped her from completing the […]
Vamorolone FAQs in JM
With the looming FDA approval of the drug vamorolone in Duchenne muscular dystrophy, there are questions surrounding the drug’s status for trials in juvenile myositis. We have consulted with JM experts on the potential implications of a pending approval for the drug in another disease and what this currently means for JM patients living in the U.S.
Embedded Behavioral Health Care in a Center of Excellence
A recently published study on integrating mental health care into a pediatric rheumatology specialty clinic, supported by the Cure JM Foundation, concluded that the need for mental health care is great and despite the challenges, with the coordination of various stakeholders, it is possible. Published in Frontiers, the principal authors were Dr. Susan Shenoi, a pediatric […]
Lemons To Lemonade For Kids
Our Story – Humble Beginnings In 2003, Cure JM co-founders Tom and Shari Hume set up the Foundation’s first-ever DIY fundraiser to seed important new research funding. What was the fundraiser of choice? Considering the couple had young children, a lemonade stand was the perfect fit to launch a rare disease nonprofit during humble beginnings. […]
Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis
Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.
“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
Ask The Doc: Why Exercise and Nutrition Are Important In JM
We are honored to share this insightful presentation and Q&A on the importance of exercise and nutrition in treating juvenile myositis with Dr. Brian Feldman of The Hospital for Sick Children and the Cure JM Clinical Care Network.
What role does exercise and nutrition play in JM treatment? When should JM patients be cleared for exercise? What effects do exercise and nutrition have on disease outcomes?
Caring for Smiles with JM: Navigating Dental Health Challenges with a Suppressed Immune System
As Cure JM parents, we know that the disease and medications often can cause a cascade of other issues. One issue many of our families see is poor dental health. Yes, a suppressed immune system can affect dental health and teeth in several ways. Since the immune system plays a crucial role in fighting infections and maintaining overall health, its […]
Abatacept Trial Concludes With Favorable Results In JM Treatment
A clinical trial treating patients with juvenile myositis with the drug abatacept resulted in lower disease activity and clinically significant responses in most patients. The trial was conducted at the Cure JM Center of Excellence at George Washington University, and preliminary results were presented at the Global Conference on Myositis. Abatacept was generally well tolerated […]
Cure JM Research Consortium Receives Prestigious Chan Zuckerberg Grant
The Chan Zuckerberg Initiative has awarded Cure JM and a consortium of Cure JM-funded researchers a coveted $2 million rare disease research grant to identify new biomarkers in JM and improve precise, personalized care through the identification of cell-to-cell interactions that drive inflammation in juvenile myositis.
Cure JM’s 20th Year Opens With the Promise of Four New Research Grants
Research Grants: New Grantees and Exciting Updates From Existing Grant Recipients This year saw a very strong field of grant applications across a variety of JDM research projects. Again, we saw applications spanning the globe, recognition of the Cure JM Foundation’s preeminence in JM research, and global reach. There is a robust process to rank […]
Why Should I Consider Getting a Second Opinion for My JM Child
Learning that your child has Juvenile Myositis may feel overwhelming. Second opinions can confirm a diagnosis, help you understand different treatment options, and review your child’s current treatment plan to ensure it’s the right one for your family.
Update on a Promising New Drug to Treat JM: Vamorolone
Cure JM is making extraordinary progress in juvenile myositis research, including a partnership with ReveraGen Biotech to advance the drug vamorolone toward a clinical trial in JM.
Update on 2027 National Family Conference and Chapter Family Days
We are excited to announce that the Cure JM National Family Conference will be back in 2025! Join us for three days with world-class JM researchers, engaging sessions for all, and social time to connect with new friends. The 15th Annual Cure JM National Family Conference is taking place June 27th -June 29th, 2023, in Chicago, Illinois.
IVIG: What Families Need to Know
Learn about IVIG (immunoglobulin therapy administered by vein). This session features Dr. Fatma Dedeoglu of Boston Children’s Hospital, Huub Kreuwel PhD, of Octapharma Plasma, and patient advocate, Michelle Vogel, of CSI Pharmacy.
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 JM kids is a safe form of “medicine” to counter the effects of the disease on a JM patient’s muscles.
Nutrition and Exercise
How to apply the nutrition and exercise recommendations sometimes provided by healthcare providers and make them work for your family in the “real world.”
The Importance of Exercise in Juvenile Myositis
Explore the importance of exercise in the management of juvenile myositis. Presented by Sue Maillard, a specialist physiotherapist at Great Ormond Street Hospital, London.
How to Talk to Your Child About Mental and Emotional Health
We know that living with juvenile dermatomyositis affects the physical as well as emotional health of our children. Sometimes it is hard to distinguish “normal” behavior and feelings from more difficult ones of depression and anxiety.
An Educational Resource and Exercise Video for Children and Their Parents
This video features stretching exercises that are an important part of rehabilitation for JM patients. The video was created for Muscular Dystrophy patients, but is still applicable for JM patients.
Sample Medication Chart
The number of medications used to manage juvenile myositis and its side effects can be overwhelming. Cure JM developed this sample medication chart to help you stay organized.
Child’s Checklist for Doctor Visits
One of the ways you can help your children cope with juvenile myositis is by giving them a sense of control over their doctor visits and treatments.
Alexandra’s Story
Alexandra grew up in Philadelphia. At eight years old, she was diagnosed with juvenile dermatomyositis. Her first symptom was pain in her cuticles whenever she touched something. Then came the rash, weakness, painful inflammation, and a host of other symptoms. Daily activities were painful, but the rash would be her main symptom during her over […]
Madi’s Story
Kindergarten is about making friends, learning how to count by two’s, and reading Biscuit books. But for Madi, Kindergarten was not so simple.