Traveling with JM
Planning a trip or vacation can be challenging, especially when you have a child with juvenile myositis. With spring break and summer break just around the corner, the pressure might be even greater. However, at Cure JM, we want to help ensure that you and your child can enjoy all the delights of a vacation with minimal stress.
A Grandparent Spotlight – Anita
Cure JM recently had the pleasure of interviewing a remarkable individual who hails from Canton, Ohio, and brings a wealth of experience and love to her family. With a vibrant history spanning over five decades of marriage, three daughters, and a rich tapestry of grandchildren and great-grandchildren, Anita Mottice’s journey is as inspiring as it is heartwarming. As a retired nurse and devoted wife, Anita shares her profound connection with her family, particularly her grandchild Sydney, who has been diagnosed with Juvenile Myositis (JM).
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.
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.
Rare Disease Warriors
Since it is Rare Disease Month, we would like to take a moment and shine the spotlight on some of our amazing JM warriors.
Myositis Specific Autoantibodies or MSA’s for Short – What You Need to Know
First, a few terms to know when talking about Myositis Specific AutoAntibodies. So why do we talk about Myositis Specific Autoantibodies? We know that JDM is different for every child. One of the reasons it is different is because of the MSAs. Since the autoantibodies are attacking the body, by understanding these “misguided fighters,” we can understand […]
Nine NEW Ways Grandparents Can Support Their Family
Here are some ideas shared with us by JM grandparents on how how to best support their grandchild, siblings, and family.
Supporting Restful Nights: Practical Tips for Parents of Children with JM
One common issue that we hear about from our families is that after diagnosis their child has trouble falling asleep or staying asleep. This can be due to a variety of factors including discomfort, pain, worry, or fear. Corticosteroids and other JM treatments can also interfere with sleep.
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.
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.
What is Juvenile Myositis?
Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.
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.
The FDA’s Ruling on Vamorolone in DMD
You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.
Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.
As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.
A Peek Inside Progress
In January, Cure JM presented a town hall on the achievements of 2023 and goals for 2024.
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.
Livy and Gianna’s Enduring Friendship
Building friendships with others in the JM community can be difficult. Since JM is a rare disease, medical common ground might be a state away. But at this summer’s conference, Cure JM’s common ground was Gaithersburg, MD. There, a friendship between two girls was built—but not from scratch. This summer Gigi and Livy shared a […]
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 […]
Advocating for Your Child: Navigating School and Community
Practical tips on how to navigate your child’s school system. Presented by Michelle Best (special education and mental health advocate) and Sue Carpenter (special education resource specialist teacher).
Information for the Newly Diagnosed
This session is for newly diagnosed families and covers JM basics, common treatments, sun protection, partnering with your medical team, keeping track of medical records, preparing for doctors’ visits, and seeking support.
Mental and Emotional Health FAQ for Caregivers
Why is emotional/mental health important to our JM kids? Where can I find out more about mental health issues for our JM kids? Where can I learn more about how JM influences anxiety and depression? Where can I learn more about the signs of anxiety and depression in kids and teens? Where can I get […]
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 […]
Meet with the Researchers Behind Two New Exciting JM Drugs
Hear directly from the researchers behind two exciting new treatments for juvenile myositis. Learn details of the new treatments and what these drugs could mean for you and your child with JM.
Juvenile Myositis 101
A world-renowned pediatric rheumatologist and immunologist tells us what juvenile dermatomyositis (JDM) is, how it is diagnosed, and how it is treated.
Treatment Plans for Juvenile Myositis
A treatment plan is based on many factors, including the severity and expression of the juvenile dermatomyositis (JDM). Each case is different and the symptoms can change over time.
What Parents Should Know About IVIg (Intra-Venous ImmunoGlobulin)
Important Information for Parents to Know About IVIg (Intra-Venous ImmunoGlobulin)
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.
Six Mindful Tips for Newly Diagnosed Families
In speaking with JM families nationwide, we have identified six, “mindful tips,” that are crucial when you, your child, and your family are battling JM.
Myositis and You
This comprehensive guide to juvenile dermatomyositis features over 450 pages with contributions from over 80 experts and medical professionals.
How Important is Exercise for JM Patients While on the Path to Recovery and Remission?
Juvenile myositis patients and parents of children with JM often ask how important exercise is while on the path to recovery and remission.
Chapter Facebook Groups
Connecting with families can be a great source of knowledge and support. To connect with other families in your region, find your area below or contact Betsy Leon at info@curejm.org.
Transitioning Care From Pediatric Rheumatology to Adult Care
Dr. Sadun is a pediatric and adult rheumatologist at Duke University, a Cure JM Center of Excellence. She recently presented at the Global Conference on Myositis (GCOM) on transitioning care from pediatric rheumatology to adult care.
Exercise and Juvenile Myositis
Over the past few years, exercise in juvenile myositis patients has garnered the attention of experts. Exercise is regarded as an important therapy in JM and should be done whether a child is in active disease or remission.
Sun Protection
Whether newly diagnosed or well into your JM journey, you’ve probably heard that sun and ultraviolet light can be a factor in triggering disease activity. Our families and patients often wonder the best ways to protect themselves or their children during the most UV-intense months.
Resources for Emotional and Mental Health
Having a chronic and rare disease is a challenging experience for anyone to go through, and especially difficult on children and adolescents.
Tips from JM Families for JM Families
Helpful tips from other JM families on topics like reducing anxiety during treatments, shots and blood draws, dentist visits, sun shades, journaling, and more!
The Importance of Taking Care of Yourself
Learn about the neuroscience of stress and how stressors impact one’s ability to cope with stress. Learn practices that help build resilience, self-awareness and improve our capacity to build relationships.
Emotional and Mental Health: Getting Help
There are resources available for mental health care though it can take awhile to research them, access them, and follow up on the care.
The Importance of Research
Research is vital to finding better treatments and a cure for juvenile myositis. Cure JM funds research studies through our Cure JM Centers of Excellence and the Cure JM Clinical Care Network.
Impact of Juvenile Myositis on Mental Health
Drs. Kaveh Ardalan, Andrea Knight and Alison Manning discuss juvenile myositis’ impact on mental health.
Transitioning from Pediatric to Adult Care
Preparing for the transition to adult care may begin with patients beginning to take an age-appropriate role in their care as early as the tween years.
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.
Rare Disease Day at NIH 2022: Cure JM Session
Our Journey with NIH — How One Rare Disease Organization Forged a Transformational Research Partnership. Moderator: Jim Minow, Executive Director, Cure JM Foundation
Juvenile Myositis Educational Video
This video provides an overview of juvenile myositis for families newly diagnosed with juvenile dermatomyositis (JDM) or juvenile polymyositis (JPM).
Emotional and Mental Health Resources: Teens and Young Adults
Besides the normal turmoil of adolescence, having a diagnosis of juvenile myositis can present you with more stress due to changes in body image, medical visits, medicines, etc.
Q & A With a Child Life Specialist
The main role of a Child Life Specialist is to help relieve the stress and anxiety that children feel when they become patients; whether in a doctor/dentist office, hospital, emergency room, hospice or any other setting in which children are served.
Understanding Second-Line Treatments and Side Effects
In this presentation, Drs. Curran and Kim explain second-line medications that should be considered after the initial treatment period with induction of treatments already discussed—either the patient cannot tolerate these medications or is still active.
Understanding Treatments and Side Effects
Understanding treatments and side effects with Dr. Megan Curran and Dr. Hanna Kim. Including current and future treatment strategies, immune system overview, steroids and other medications, and more.
Cure JM Foundation Literature
The following brochures, handouts and posters are available for online viewing and printing. If you need professionally printed copies for an event, please contact us.