Love Letter to a Grandparent
Dear Grandma and Grandpa, I miss you and really wish we lived closer to each other. I love when you send my mommy pictures of the cats that hang around your house. They remind me of all the fun I have when I get to visit you. I wanted to let you know I had […]
2024 Year in Review – 12 Milestone Moments
2024 has been a momentous year for life-improving progress in research, clinical care, and empowering support and education. We invite you to join us in reflecting on the moments that made 2024 our best year together yet! January – Brought the Cure JM National Family Conference connection and education to the local level through Cure […]
Unlock the Secrets Within Inside the Cell – Discovering the Key to New Treatments & Cures
Join us in hearing from Dr. Turnier and Dr. Neely as they dive into the cutting-edge world of cellular research, where breakthroughs are paving the way for innovative JDM treatments. Explore how understanding the intricate workings of cells is revolutionizing medicine and bringing us closer to life-changing solutions. Join us on this journey of discovery […]
Why I Fundraise
Rebecca Karsten– “Hello! Welcome to a wonderful community that even though we never wanted to join; we are now so happy to be part of. Our daughter was only 2 when she was diagnosed with JDM and we got connected almost immediately through the website and family support networking. The first few months, other parents […]
Love Letter to a Grandmother
Dear Mom, The past two years have been like none I could have imagined. When CeCe was diagnosed with JDM and her life as a normal child ended; I forgot how to breathe. For the past two years, I’ve been holding my breath. I’ve held my breath through over 107 methotrexate injections, 23 hospitalized infusions, […]
Emma’s Story of Hope – A Tale of Life-Changing Care
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.
A Guide to 2nd Line Treatments and New Treatments on the Horizon
Hear from Dr. Susan Shenoi on how to unlock the knowledge you need to make informed decisions about 2nd line treatments and the promising new therapies on the horizon. In this town hall, you will understand the next steps in your treatment journey, and be empowered with the latest insights and options. Dr. Shenoi’s town […]
Understanding Calcinosis in JM: Advances in Treatment and Research Results
Dr. Christian Lood is a professor and researcher who studies autoimmune diseases, focusing on a condition called juvenile myositis (JDM) that affects kids’ muscles and skin. He works with a group of doctors and scientists at the University of Washington and Seattle Children’s Hospital to find better treatments for children with JDM. At the October […]
JDM 101: Lo Que Los Padres Necesitan Saber
Únase a nosotros para escuchar al Dr. Torres. JDM 101: Lo Que Los Padres Necesitan Saber – Prepárate con el conocimiento esencial para enfrentar la dermatomiositis juvenil (JDM). Esta guía ofrece a los padres la información clave necesaria para comprender, manejar y abogar por la salud de su hijo. In English: Join us in hearing […]
Required Minimum Distribution
You can send your Required Minimum Distribution (RMD) to a charity using a strategy called aQualified Charitable Distribution (QCD). A QCD allows individuals aged 70½ or older todonate up to $100,000 per year directly from their Individual Retirement Account (IRA) to aqualified charity, without having to count the distribution as taxable income. Here’s how to […]
Grandparent Council
What is the Grandparent Council? We are grandparents of a grandchild living with juvenile myositis. Our mission as grandparents is to learn about juvenile myositis and support each other so we can support our grandchildren and their families. We also help advance Cure JM’s mission to give our grandchildren the best shot at a bright future ahead. […]
Grandparent Giving
Supporting Cure JM: A Grandparent’s Guide to Making a Difference As grandparents, your love and support are the bedrock of your family’s strength. You provide wisdom, guidance, and an abundance of love, all of which make an incredible impact on your grandchildren’s lives. At Cure JM Foundation, we recognize and appreciate the vital role you […]
Unveiling the Future of Hope
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.
Cure JM Funded & Partner Clinical Trials
Cure JM is dedicated to funding and collaborating on the most promising juvenile myositis research clinical trials to shape a future free of JM. We are dedicated to supporting better treatment options through the clinical trial process to improve the lives of generations of JM patients. CAR-T Myositis Clinical Trial We are supporting clinical trials […]
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 we know how overwhelming a new myositis diagnosis can be. That’s why we offer our Cure JM Mentor Program, connecting you with experienced individuals who have walked a similar path […]
Cure JM Partner Researchers Unveil Three Major Breakthroughs
Last year, Cure JM and a team of collaborative researchers received a prestigious $2 million grant from the Chan Zuckerberg Initiative to advance our understanding of juvenile myositis (JM). The goal? To discover new markers in the blood that could lead to more precise, personalized care for children with JM. We are excited to share […]
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 while pursuing her Doctor of Philosophy at the University of Bath, United Kingdom. Through this work, Fionnuala has gained valuable […]
Walking Strong – Empowered by Unity
Like other teens new to the JM journey, Catie Beth Caldwell and Madi Cook were two individuals who felt alone at the beginning of their journeys. Catie Beth was diagnosed just before the Covid-19 pandemic took hold of the world as we knew it. With this came feelings of isolation and loneliness. These emotions were commonplace for many teens but were only compounded by teens new to a rare disease diagnosis. These first years of the “new normal” were difficult to navigate.
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.
FAQs about the RESET-Myositis Trial for CAR-T
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 is […]
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.
Protected: Could CAR-T Be A “Magic Bullet” We’ve Been Looking For?
There is no excerpt because this is a protected post.
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, […]
What We Know About Calcinosis & How to Treat It
At the October 25th Town Hall, Dr. Christian Lood, professor and researcher at the University of Washington and Seattle Children’s Hospital, presented on the topic of treating a potential complication of juvenile myositis known as calcinosis. Calcinosis is the accumulation of calcium phosphate crystals in soft tissue (skin, muscle). It appears as hard, irregular nodules […]
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.
My Mission, My Impact – The Carlson’s Ride Strong
We are continually moved by the creativity and unwavering passion that our families exude in their DIY fundraisers that make our mission possible. My Mission, My Impact, is dedicated to spotlighting some incredible events and fundraisers that breathe new life into our continued mission. The families featured have channeled their creative energy and talents to […]
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 Twenty-one years ago, 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 […]
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.