Cure JM Foundation Videos

Information About Cure JM Foundation
Information for the Newly Diagnosed
Cure JM Sponsored Town Halls with Healthcare Professionals
COVID-19 Information
Cure JM Annual Conference Videos

Information about Cure JM Foundation

An Interview With Cure JM’s Co-Founders

Support Cure JM

Fundraising/Overview Video

Cure JM 2019: Towards Better Treatments

Presented by Cure JM Foundation CSO Dr. Andrew Heaton

Parker’s Journey and the Start of Cure JM

Information For the Newly Diagnosed

Cure JM Educational Video

Video for the Newly Diagnosed

JDM 101 with Dr. Ann Reed

Dr. Ann Reed is Chair of the Department of Pediatrics at Duke University and a Professor of Pediatrics at Duke. She’s a world-renowned pediatric rheumatologist and immunologist, who has spent decades caring for children with Juvenile Dermatomyositis (JDM). In this video, Dr. Reed tells us what JDM is, how it is diagnosed, and how it is treated.

Cure JM Sponsored Town Halls with Healthcare Professionals

VIRTUAL SYMPOSIUM FOR HEALTHCARE PROFESSIONALS
Juvenile Dermatomyositis: Advances in basic research, translational studies and clinical care

Hosted by Duke University and Cure JM Foundation. March 12th, 2022.

CLICK HERE FOR A LIST OF PARTICIPATING SPEAKERS

Rare Disease Day 2022 at NIH

Our Journey with NIH — How One Rare Disease Organization Forged a Transformational Research Partnership
Moderator: Jim Minow, Executive Director, Cure JM Foundation

2021 Cure JM Impact Report & Goals for 2022

Featuring:

Jim Minow, Executive Director of Cure JM
Andrew Heaton, PhD, Chief Science Officer
Shannon Malloy, Director of Development and Family Engagement

How to Talk to Your Child About Mental and Emotional Health

Featuring:

Stacey Haynes, PhD Psychologist, Seattle Children's Hospital - Cure JM Center of Excellence
Megan Curran, MD, Associate Professor of Pediatrics University of Colorado - Denver,
Attending Physician, Pediatric Rheumatology - Colorado Children's Hospital
Anna Ramsey, BA, working on MSW, Young adult living with JM since adolescence
Annie Mitchell, BA in Special Education, Cure JM Board of Directors and mom to a child with JM

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.

Meet With the Researchers Behind Two New Exciting JM Drugs

Featuring Dr. Kaveh Ardalan of Duke University, Dr. Travis Kinder of the NIH, and Jim Minow, Cure JM Executive Director.

Hear directly from the researchers behind two of the most exciting new treatments for JM. You’ll learn details of the new treatments and what these drugs could mean for you and your child with JM.

Presentations from the Town Hall are below.

What Families Need to Know about the COVID-19 Vaccine

With Dr. Lisa Rider and several other physicians from the NIH and Children’s National Hospital

What are the currently approved COVID-19 vaccines?
Who are they approved for?
How are these vaccines relevant for children and young adults with JDM?
Doctors will answer some frequently asked questions and then take questions from attendees

Information for the Newly Diagnosed

Megan Curran, MD, attending physician in the Section of Rheumatology at Children’s Hospital Colorado and an associate professor at University of Colorado School of Medicine, and Dawn Wahezi, MD, MS, Division Chief of Pediatric Rheumatology and Director of the Pediatric Rheumatology Fellowship Program at Children’s Hospital at Montefiore, discuss:

JM Basics
Common Treatments
Sun Protection
Partnering with your Medical Team and Preparing for Doctors’ Visits
Keeping Track of Medical Records
Seeking Support

IVIG: What Families Need to Know

Featuring Dr. Fatma Dedeoglu of Boston Children’s Hospital, Huub Kreuwel PhD, of Octapharma Plasma, and patient advocate, Michelle Vogel, of CSI Pharmacy.

Advocating for Your Child: Navigating School and Community

Learn real-life, practical tips on how to navigate your child's school system, including: - How to communicate with your child's school - Understand 504, IEP plans, and which one is right for your child - How to navigate sun protection issues, social issues, P.E. class, and other classroom accommodations Presented by: Michelle Best, special education and mental health advocate Sue Carpenter, special education Resource Specialist teacher Both Michelle and Sue are moms to children with JM.

VIEW/PRINT/DOWNLOAD PRESENTATION IN PDF FORMAT

The Importance of Taking Care of Yourself

In this interactive session, you will 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.

The Importance of Exercise in Juvenile Myositis

This Town Hall explores the importance of different types of exercise in the management of JM and is presented by Sue Maillard, a specialist physiotherapist at Great Ormond Street Hospital, London. She has specialized in Pediatric Rheumatology Physiotherapy for over 30 years and has a specialist interest in Juvenile Myositis. She has completed research in the safety of exercise in JDM and leads a physiotherapy team to provide an inpatient rehabilitation program for children, as well as reviewing and managing home treatment programs.

Juvenile Myositis Family Educational Conference

Presented by Seattle Children’s Hospital Juvenile Myositis Center of Excellence and Cure JM’s Pacific Northwest Chapter.

Featuring:

Susan Shenoi, MBBS, MS, RhMSUS
Natalie L. Rosenwasser, MD
Leslie Vogel, MSPT and Courtney Ginter PT, DPT
Suzanne Edison, MA, MFA, Co-Chair of Cure JM’s Research Committee
Jim Minow, Cure JM Executive Director

Individual Presentations are below video.

Nutrition and Exercise

What are the best foods for my child with JM? How do we handle the steroid cravings? How do we eat healthy with all the side effects of the medications? Are there exercises my child can do to improve their outcome? In this interactive session, we will talk about how to apply the nutrition and exercise recommendations sometimes provided by healthcare providers and make them work for your family in the “real world.” Presented by: Brian Feldman, MD, MSc, FRPC and Julie Shevlin, MS, RDN.

Update on a Promising New Drug to Treat JM: Vamorolone

Presented by Eric Hoffman, PhD, Vice President of Research, ReveraGen. (slide show below)

Flare Predication and Risk Profiling in JDM

Dr. Annet van Royen-Kerkhof’s presentation based on her research paper, “Endothelial and Inflammation Biomarker Profiles at Diagnosis Reflecting Clinical Heterogeneity and Serving as a Prognostic Tool for Treatment Response in Two Independent Cohorts of Patients With Juvenile Dermatomyositis”. The paper details a Cure JM-funded study that aimed to define “immune-fingerprints” that can predict clinical outcomes and responses to therapy in chronic inflammatory diseases, such as juvenile dermatomyositis (JDM).

Transitioning from Pediatric to Adult Care with Rodolfo Curiel, MD, FACP, FACR, and Rebecca Sadun, MD, PhD

Join doctors Curiel and Sadun to learn strategies to aid in the transition from pediatric to adult care.

Auto-Antibodies in Juvenile Myositis

This webinar will introduce you to the concept of Myositis Specific Antibodies, or MSAs. The webinar is presented by Sara Sabbagh, D.O., Clinical Fellow, Muscle Disease Unit at the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health (NIH).

Understanding Labs and Investigations with Dr. Adam Huber

Labs and investigation results are an essential tool in managing a patient’s treatment for JM. To the non-medically trained, labs and investigations can also be a great source of confusion. In this webinar, Dr. Adam Huber, a pediatric rheumatologist at the IWK Health Centre and Dalhousie University in Halifax Nova Scotia, Canada, helps patients and family members better understand lab and investigation results and what they may indicate. Due to technical difficulties, there is no recording of this webinar, but you may review Dr. Huber's slide presentation below.

Understanding Treatments and Side Effects with Dr. Megan Curran and Dr. Hanna Kim

Understanding Second Line Treatments and Side Effects with Dr. Megan Curran and Dr. Hanna Kim

Exercise and JM with Dr. Laura Tasan

Sun Protection with Drs. Susan Kim and Adam I. Schiffenbauer

Impact of JM on Mental Health with Drs. Kaveh Ardalan, Andrea Knight and Alison Manning

COVID-19 Information

Recording of Cure JM Town Hall: Returning to School in the COVID-19 Pandemic

This Town Hall addresses the issue of returning to school during the COVID-19 pandemic and aims to provide a range of tools, links and resources to assist families in making individual decisions in considering whether their child should return to school this fall. The tools and information will provide valuable resources for families to discuss their individual circumstances with their attending physician. The Town Hall was led by Rear Admiral Charles Vitek, MD, MPH, Colleen Correll, MD, MPH, and Dawn Wahezi, MD.